Anthony Nolan - 40 Years of Saving Lives by Chris Knight

ANTHONY NOLAN

40 YEARS OF SAVING LIVES

Anthony Nolan was a boy who changed the world. Forty years ago, in January 1974, a register of potential bone marrow donors was created by his mother, Shirley, in the hope of finding a cure for the life-threatening blood disorder her son had been born with. This book documents the incredible story of Anthony and the charity which was created in his name. It’s a story which began at the moment of Anthony’s birth and continues to this day. It’s the story of a boy’s own fight for survival and the battle his mother fought to establish a lifesaving resource in his name. But it’s also a story which features thousands of other, incredible individuals: patients with leukaemia and other blood cancers, donors who have given their bone marrow to save a stranger’s life, scientists looking for new ways to tackle blood cancer and other blood disorders and immeasurable numbers of people who have supported the work being done in Anthony’s name over the last 40 years.

£20

ANTHONY NOLAN 40 YEARS OF SAVING LIVES

Author: Peter Zarko-Flynn Editor: Emma Langbridge

ÂŠ Anthony Nolan November 2013. No part of this book may be reproduced without written permission from Anthony Nolan. 2 Heathgate Place, 75-87 Agincourt Road, London NW3 2NU 0303 303 0303 www.anthonynolan.org Registered charity number 803716/SC038827

Whilst every effort has been made to ensure factual accuracies in this book, Anthony Nolan cannot accept liability for any inaccuracies contained herein.

Design and Print Designer: Katie Knight Baines Design Barley House, Sopers Road, Cuffley, Hertfordshire EN6 4RY www.bainesdesign.co.uk

Cover Image: Shirley and Anthony Nolan c.1974

For all our supporters who have helped save the lives of thousands of blood cancer patients.

‘I BELIEVE THAT ANTHONY REPRESENTED MUCH MORE THAN THE STRUGGLE TO ESTABLISH A BONE MARROW TRANSPLANT PROGRAMME IN BRITAIN. HE REPRESENTS THE RIGHTS OF THE INDIVIDUAL IN OUR SOCIETY, ESPECIALLY THOSE OF CHILDREN AND THEIR BASIC HUMAN RIGHT OF A CHANCE TO LEAD A NORMAL, HEALTHY LIFE.’ SHIRLEY NOLAN

CONTENTS

FOREWORD

SECTION ONE:

THE SHORT LIFE OF ANTHONY NOLAN THE CATALYST SHIRLEY NOLAN PAULINE COLLINS FROM BROOM CUPBOARD TO STATE-OF-THE-ART LABS JOANNA LUMLEY THE POWER OF THE MEDIA REMEMBERING SHIRLEY NOLAN

12 16 20 26 29 34 36 41

SECTION TWO:

LIFESAVING SUPPORT FROM THE ROUND TABLE AN EARLY MATCH OVERCOMING INTERNATIONAL BOUNDARIES EARLY FUNDRAISING YOUNG, HEALTHY AND MALE

46 52 54 58 60

SECTION THREE:

THE BONE MARROW SUPER-MUM ROYAL PATRONAGE CREATING A GLOBAL NETWORK OF SCIENTISTS FLOWER POWER: 20 YEARS OF THE DAISY BALL LINDA ROBSON A MARATHON EFFORT ANONYMOUS CONTACT TIMELINE: THE PAST 40 YEARS THE LAUNCH OF STUDENT GROUP, MARROW FROM PATIENT TO CAMPAIGNER

68 70 72 76 78 80 85 88 90 96

SECTION FOUR:

100

SAVING LIVES ACROSS THE WORLD MAKING DONATION SIMPLE DAVID HAREWOOD BACKED BY BIG BUSINESS MEDICAL BREAKTHROUGH WITH CORD BLOOD REGISTER & BE A LIFESAVER STEPHEN AND JAMES’ STORY

102 106 110 112 114 124 128

SECTION FIVE:

132

THE CHANGING FACE OF THE CHARITY ALICE’S BUCKET LIST REGISTRATION REVOLUTION KEEP CALM AND COURIER ON JOINING FORCES: CREATING A SINGLE REGISTER HELPING TO DIVERSIFY THE REGISTER CHANGING THE JOINING POLICY A LEGACY FOR LUCAS

134 136 138 141 148 150 152 154

SECTION SIX:

156

COMING FULL CIRCLE: ANTHONY’S NURSE BENEFITS FROM HIS LEGACY 158 OUR VISION FOR THE NEXT 40 YEARS 160 THE FUTURE 166 LEADERSHIP OVER THE YEARS ACKNOWLEDGEMENTS INDEX

168 169 170

FOREWORD

The story of Anthony Nolan is a remarkable one. From humble beginnings 40 years ago, one woman set in motion a cause which saves people’s lives in a way which very few organisations can claim to do. Shirley Nolan created the world’s first register of people willing to donate their bone marrow to help a stranger in need of a lifesaving transplant. Her primary motivation was, undoubtedly, to save the life of her son Anthony, who had a rare genetic blood disorder, but Shirley could genuinely see the wider benefits such a system could offer people around the world. Upon Anthony’s death in 1979, Shirley vowed to continue the charity’s work so no other parent would have to face losing a child in the same circumstances. Shirley was a remarkable woman who left a remarkable legacy. She inspired me, and everyone else she met, in an extraordinary way. That inspiration lives on within the charity today. As Chairman, I have been

privileged to work alongside so many talented and committed individuals who have dedicated themselves to building on the foundations which were laid by Shirley four decades ago. The science has progressed so much over the course of the charity’s 40-year history that the techniques we use today would have been unimaginable 40 years ago. Today, we only need a saliva, rather than a blood, sample for people to join the register. Patients can now usually donate their blood stem cells rather than bone marrow, which is far less invasive. We have a cord blood bank which is already saving lives. Our commitment to research means that we are rightly recognised as world leaders in the field of tissue typing, the process which allows us to find the best donor to match the patient in need of a transplant. We have dramatically increased the number of transplants we facilitate each year. From identifying only a handful of suitable donors in the early years, we now provide the chance of life

to more than 1,000 patients a year, giving hope to both them and their loved ones. Of course, there is still so much more work for us to do. Despite the growth of the register, we are still not able to find a matching donor for every patient who needs a transplant. And, when we do, sadly not every transplant is successful. Tissue typing is incredibly complex and, 40 years on, our researchers are still making vital new discoveries about the process. By working closely with transplant centres and taking part in clinical trials, we are now also focusing on the quality of patients’ lives post-transplant. We will continue to collaborate with research into this area until every single transplant is a full success. There are so many people who have played a role in the charity’s history, it is impossible to mention every single person in this book. We can only attempt to provide a glimpse into the many incredible individuals who have played a part.

I do, however, feel it is right to single out one particular group - the donors. If you ever need an example of the kindness of strangers, you need look no further than Anthony Nolan. Our charity is built on one person directly helping another whom they know nothing about. They provide them with the gift of life, with no reward other than knowing they have done something truly amazing. It has been an inspiring four decades and I am sure the next four will be even more exciting. Our work will not be done until every single person in need of a transplant can be found a successful match and has a good quality of life after their transplant. That was Shirley Nolan’s dream and we are determined that one day we will fulfil it. Enjoy the book!

Simon Dyson, MBE Chairman

SECTION ONE

‘AT THE START OF MY NURSING CAREER I WAS ASSIGNED TO CARE FOR A LITTLE BOY CALLED ANTHONY NOLAN. I HAD NO IDEA, AT THAT TIME, JUST HOW MUCH OF AN IMPACT ANTHONY WOULD ULTIMATELY HAVE ON MY LIFE.’ SARAH COOMER, NURSE AND TRANSPLANT PATIENT

THE SHORT LIFE OF ANTHONY NOLAN Anthony Nolan was born on the morning of Thursday 2 December, 1971 in Adelaide’s Memorial Hospital, in South Australia. His mother, Shirley, originally from Leeds in West Yorkshire, had travelled to Australia at the end of the 1960s with her future husband, Ted.

‘We have a long hard road ahead but I look to the day when no child dies like my son, waiting for a donor to save him.’ Shirley Nolan

After a long labour and difficult birth, Shirley was only able to hold her newborn baby boy for a brief time before he was transferred to a special unit. There was nothing particularly unusual in this; the baby of another woman on Shirley’s ward was also moved to the unit following a complicated delivery. However, that night, doctors woke Shirley from her sleep. She knew instantly that something was wrong. The doctors broke the news that her newborn baby – not even 24-hours old – had suffered a severe brain haemorrhage. The doctors told Shirley that her son had already been transferred to the Children’s Hospital and warned her there was little chance he would survive.

The night sister held Shirley’s hand and quietly asked ‘What do you wish him to be christened, my dear?’ Shirley said, in the quietest of whispers, ‘Anthony’. During the operation to treat the haemorrhage Anthony died but the doctors managed to resuscitate him. Anthony, like his mother, was a fighter. However, Anthony’s condition was so severe that he was not allowed to leave hospital. He had an abnormally low blood platelet count. Platelets cause the blood to clot and, because he had so few of them, Anthony lived under the constant threat of death from further haemorrhaging. It was shortly before Anthony was six months old that his complex condition was finally diagnosed. He had WiskottAldrich syndrome, a rare genetic deficiency of the immune system. The syndrome can cause severe bleeding problems, such as haemorrhaging, eczema, infections and auto-immune disease.

‘ANTHONY’S WAS A SHORT, TOUGH LIFE BUT NONE OF US KNEW WHAT A FAR-REACHING LEGACY THAT CHILD WOULD LEAVE.’ PAULINE COLLINS

Shirley was told by Anthony’s consultant that the condition was incurable and that children with the syndrome rarely lived beyond two years of age. Shirley and Ted decided to have Anthony discharged. They wanted him to experience as much love and happiness as possible, in their own home, in the time he had left. The next 18 months were incredibly challenging as Anthony continued to suffer from regular haemorrhaging. Shirley did everything within her power to make her son as comfortable as possible, knowing that he may not have much more time left. Then, one morning, Shirley read a report in the local newspaper about a little boy of Anthony’s age who had a condition which sounded very similar to Anthony’s. The boy, called Simon Bostic, had undergone a bone marrow transplant at Westminster Hospital in London, England. It was the first time anyone had successfully received bone marrow from an unrelated donor.

Shirley Nolan hugs her son Anthony

unrelated donors. It was harder than searching for a needle in a haystack. It was then that Shirley Nolan had a vision: to start a bone marrow register that would connect potential donors with people like her son, who desperately needed a transplant.

Anthony in hospital with his mother Shirley, father Ted and grandmother Rhoda

Shirley flew to London with Anthony and her mother Rhoda with the hope of Westminster Hospital being able to perform a bone marrow transplant on Anthony.

to donate her bone marrow to Anthony. After further tests, however, they received the heart-breaking news their tissue types were not a close enough match. This meant they faced an almost insurmountable challenge; to find - somehow, somewhere – a person whose bone marrow exactly matched Anthony’s and who would be willing to donate their bone marrow to help a complete stranger.

At first, it appeared that Shirley’s mother may be able

At that time, there was no system in place to find

Shirley felt, for the first time, that there was a glimmer of hope for her son’s future. She no longer accepted that his condition was incurable and was determined to do everything she possibly could to save her son.

She launched the Anthony Nolan Appeal in January 1974 and worked tirelessly over the next few years to set up a register of potential bone marrow donors who may be a match for her son and for others with blood cancers and life threatening blood disorders. Shirley began to publicise Anthony’s plight. Initial features in the local newspaper created a surge of support from people living nearby. Then the story attracted national interest, which was quickly followed by reports back in Anthony’s birthplace of Adelaide, South Australia. Before long, it seemed the whole world knew of this remarkable boy and his equally remarkable mother. An amazing number of people began to sign up to the Anthony Nolan Register,

‘HE WAS ALWAYS SO HAPPY, HE HAD SUCH TREMENDOUS COURAGE AND HE GENERATED A FLAME OF LOVE AND RESPECT. HE NEVER GAVE IN.’ SHIRLEY NOLAN

giving a commitment that they would be willing to donate their bone marrow if it was found to match someone in need of a lifesaving transplant. Within a year of the register being set up, more than 1,500 people had joined. By 1978, more than 17,000 people were on the register. Throughout this time, Anthony kept defying the odds. Despite being told that he probably wouldn’t live to his second birthday, Anthony celebrated his third, fourth, fifth, sixth and seventh birthdays. The media would often come to see Anthony on his birthday and take photos of him blowing out the candles on his cake. Despite his poor health, Anthony always managed a smile which won over an ever larger number of people, moved by his desperate plight.

Tragically, despite the incredible battle Anthony and Shirley both fought, on 21 October 1979, Anthony died without a suitable donor being found. He was seven years old. Shirley once wrote that Anthony had ‘experienced birth and death in just 48 hours, having crossed the great unknown and returned. I firmly believe that he now knows what that world is beyond, and was returned to this one for a purpose.’ So, this is where Anthony’s legacy began – and it continues to this day; finding those who are prepared to

donate their blood stem cells or bone marrow to a complete stranger, one who desperately needs the chance of life. Sadly, even today, it is not possible to find a suitable match for every person in need of a lifesaving transplant. That is why Anthony’s legacy still lives on and why the charity in his name will continue to work until the day that no one in need of a transplant dies before a suitable donor can be found.

Every birthday, Shirley hoped this would be the year that Anthony would find a match and finally be given the chance to have a normal childhood.

THE CATALYST

Shirley Nolan’s decision to bring Anthony from Adelaide to London in search of treatment – which ultimately led to her creating the world’s first bone marrow register – happened because of another remarkable young boy, Simon Bostic. In 1973, Simon Bostic became the first person in the world to receive a bone marrow transplant from an unrelated donor. Simon was born in 1971, the same year as Anthony. Like Anthony, Simon was born with a rare, life-threatening blood disorder. Doctors told Simon’s parents, Elisabeth and Roger, that a bone marrow transplant was his only chance of survival. Bone marrow transplants were in their infancy and had only been carried out where a close family member had the same tissue type. Simon’s family were tested but noone proved to be a match.

Simon Bostic as a baby 16

Simon’s mother enlisted the media’s help in tracking down a suitable donor among the general public. Against all odds, given there was no formal system in place for registering and tissue-typing potential donors at the time, a 28-year-old woman – Joan McFarlane from Cambridge – came forward and proved to be an exact match. On Friday 13 April, 1973, Westminster Hospital extracted bone marrow from

Joan’s hip and successfully transplanted it into Simon, who was 21 months old. This remarkable scientific breakthrough was reported in the news around the world, including the Adelaide Advertiser in Australia. When Shirley read about Simon, she realised a bone marrow transplant might provide Anthony with a similar hope of life. She immediately wrote to Simon’s mother and phoned Westminster

‘I AM VERY PROUD INDEED THAT, IN SOME WAY, I MAY HAVE INSPIRED OR CONTRIBUTED TO THIS INCREDIBLE SUCCESS.’ SIMON BOSTIC

Hospital to speak to Professor Humble, who had carried out the transplant. Encouraged by the responses she received, Shirley flew to England with Anthony, in the hope a match could be found for him. As well as being the catalyst which set Shirley on her journey to create the world’s first bone marrow register, Simon is also a testament to the lifesaving potential of bone marrow and blood stem cell transplants. He celebrated his 40th birthday in July 2011 and works in a demanding job organising international events to raise money for charities including Anthony Nolan. Simon said: ‘It is almost inconceivable now to think of a world where there was no register of bone marrow and stem cell donors. It was pure luck that the national press picked up my story and, consequently, an unrelated donor was found for me. My tissue type was so rare that only one in 50,000 people were compatible. This is not uncommon today but, thanks to the tireless efforts of Shirley Nolan in setting up the world’s

first register, matches can be much more easily found. Anthony Nolan is a lifesaver for many people; not only by providing a register but also due to the research and work that the charity supports which has improved techniques for donating stem cells and transplanting them. I am very proud indeed that, in some way, I may have inspired or contributed to this incredible success.’

Simon Bostic today 17

‘ANTHONY’S STORY WAS ONE OF THE FIRST I EVER COVERED AS A CUB REPORTER - AT LBC. I WAS ENORMOUSLY STRUCK BY THE DETERMINATION OF SHIRLEY TO ENSURE THAT ANTHONY’S MEMORY LIVED ON IN THE ENDEAVOUR TO FIND A CURE. IT IS A MASSIVE TRIBUTE TO SHIRLEY THAT HER CHARITY LIVES ON 40 YEARS LATER. TOGETHER, ANTHONY AND SHIRLEY HAVE LEFT A LEGACY OF HOPE FOR THOUSANDS AFFECTED BY CANCER.’ JON SNOW, BROADCASTER

SHIRLEY NOLAN

Brave. Bold. Remarkable. Determined. Driven. Charismatic. These are the words people who knew Shirley Nolan use, time and again, to describe her. And there is one phrase – a dedicated mother – that forms part of every conversation about her. A mother who put everything else to one side to save her only child, Anthony. A mother who never gave up on her vision to create the world’s first bone marrow register to find a match for her son and others in need of a lifesaving transplant.

Born in Leeds in 1942, Shirley Nolan was educated at Pontefract Girls’ High School in Yorkshire and Trent Park College in Hertfordshire. She then went on to attend the Guildhall School of Music and Drama in London. After graduating, Shirley became a teacher. Her first job, in 1963, was at Harlow New Town School in Essex. Within two years, demonstrating the drive and ambition she became so well-known for, she had been promoted to lead the drama department at a school in Rainham, Essex.

Shirley loved teaching and particularly enjoyed the challenge of working with the more problematic children – in her words ‘the ones from broken homes, foster homes and those on probation’. She said each child was special to her and she felt, during that time, as though she had a huge family of her own. At the end of the 1960s, Shirley decided to take a break from teaching. She wanted to see the world and decided to drive overland to Australia on the famous London-to-Sydney route. It was while preparing for the trip that she met her future husband, Ted. They made the journey together and initially settled in Darwin, the capital city of Australia’s Northern Territory. Two years later, when Shirley discovered she was pregnant, they decided to move to Adelaide in South Australia where the climate was warmer. On 2 December 1971, at Adelaide’s Memorial Hospital, Shirley gave birth to her first, and only, child Anthony. Anthony was born with Wiskott-Aldrich syndrome, a rare genetic deficiency of

the immune system. He was not expected to live beyond his second birthday. However, after Simon Bostic became the first person in the world to receive a bone marrow transplant from an unrelated donor, Shirley travelled to Westminster Hospital in London in December 1973, where the transplant had been carried out. She hoped the same procedure could save her son. It was here that Shirley met Dr David James, a consultant pathologist at Westminster Hospital who was responsible for the donor testing programme for bone marrow transplants. During conversations with Dr James, Shirley learned of the logistical difficulties and high costs involved with finding a suitable donor. Dr James broke the news to Shirley that the funding for testing potential donors had dried up. Shirley pledged to raise the money herself. In January 1974, Shirley launched the appeal to set up the world’s first bone marrow register. It was her vision to set up a system which would detail the tissue type of every potential donor and speed 21

up the process of finding a suitable match for people in desperate need of a lifesaving transplant. Shirley’s first interview with her local paper, the Kentish Express, became front page news. Soon after, national newspapers were covering the story of Anthony and interviewing Shirley about the remarkable appeal she had launched. International media followed and soon Anthony’s story had travelled around the world. Shirley launched herself into every aspect of the appeal; fundraising, publicity and administration. That, in itself, was no small feat but, combined with caring around the clock for her desperately ill little boy, 22

Happy times with Rhoda and Shirley

Anthony, it required an almost super-human effort. Anthony’s condition meant that he regularly haemorrhaged, often in the middle of the night. In her book, A Kiss Through Glass, Shirley wrote in graphic detail about the distressing episodes when Anthony would bleed severely, sometimes for hours at a time. She described the horror of blood soaked nappies, and the bruises all over his body caused by the bleeding under the surface

of his skin. Such episodes were terrifying for Anthony and traumatic for his mother. Shirley could not have managed without the support of her mother, Rhoda, who she referred to as her ‘prop’. They would work together to nurse Anthony through the night and Rhoda would often look after her grandson while Shirley attended to aspects of the appeal. Working out of the tiny, run-down cottage she was renting in Thanet, Kent, Shirley sent

‘SHE WAS A VERY BRAVE WOMAN WITH A SPECIAL BOLDNESS THAT, I THINK, CAN ONLY COME FROM A MOTHER’S LOVE.’ JOANNA LUMLEY

a hand-written reply to every person who sent in a donation or other offer of help. It was not unusual for Shirley to still be working on the appeal in the early hours of the morning. Her gratitude to everyone who offered help, however small, was something she expressed regularly throughout her life. Shirley also received support with fundraising from a journalist, Marion Matthews, who had covered Anthony’s story. One of the earliest ways they tried to raise funds was by asking people to donate Green Shield Stamps, which customers collected when

Shirley Nolan collecting Green Shield stamps

spending money at petrol stations, corner shops and supermarkets. Marion stored the donated stamps in her own home and, at one point, could barely get into her lounge because of the thousands upon thousands of Green Shield booklets sent in by people wishing to support Anthony. Shirley’s strong personality also made her a formidable campaigner. There were more than a few politicians who quickly learned that she was a woman who would never take no for an answer. She was

frustrated that neither the Australian nor British governments were willing to help fund the tissue typing programme that she knew would save so many lives. In December 1974, Shirley organised a demonstration to coincide with a visit by the Australian Prime Minister, Gough Whitlam. Together with a small group of supporters carrying placards, Shirley held protests to coincide with Mr Whitlam’s arrival at 10 Downing Street and Australia House. On both occasions, police blocked

Shirley Nolan and supporters protesting in Downing Street

Shirley from directly confronting the Australian Prime Minister. However, Shirley said the police treated her with courtesy and told her they’d been following Anthony’s story in the media. A short time later, the Metropolitan Police organised a recruitment drive which resulted in many members of the force joining the register. Shirley spent the rest of the 1970s tirelessly campaigning and fundraising – with immense support from the Round Table. She also continued to support Dr David James and the very small team of lab staff who were all committed to building the register and finding a match for Anthony, and others in his position. Heartbreakingly, a match was never found for Anthony and he died in October 1979. At this point, everyone would have understood if Shirley needed to retreat and allow herself time to grieve. As well as having lost her only child following years of working day and night to save him, Shirley had been diagnosed with Parkinson’s disease in her 30s and was already beginning to suffer serious side effects. 24

‘MY GREATEST REWARD HAS ALWAYS BEEN KNOWING THAT MY LITTLE BOY DID NOT DIE IN VAIN.’ SHIRLEY NOLAN

Dyson, who she first met when he was the National Community Service Liaison Convener for the Round Table. She described him as ‘the most caring, sincere and dynamic person I have had the privilege to meet’ and, in 1987, Simon was appointed as Anthony Nolan’s Chairman.

Shirley Nolan, Chairman Simon Dyson and Chief Executive Anthony Morland being received by Her Majesty The Queen at the 1992 Hampton Court Palace Flower Show

Shirley was determined, however, that Anthony’s death would not be in vain. She was committed to growing the Anthony Nolan register into a worldwide resource. She was unswerving in her belief that no-one should die in the future because a matching donor could not be found. She selflessly continued to work on building up the register, seeking to help others with the same energy

and enthusiasm as when her own son’s life was at stake. From 1984, with her Parkinson’s worsening, Shirley decided to return permanently to her home in Adelaide. Her input to the charity never waned and she would stay in contact by phone on a weekly basis and travel back to England when her condition allowed. From this time, Shirley was supported by Simon

Simon would accompany Shirley during her visits to England. On one such visit, her outstanding work was recognised when Shirley was received by Her Majesty the Queen and His Royal Highness The Duke of Edinburgh at the 1992 Hampton Court Palace Flower Show. In 2000, Shirley was awarded an OBE for her services to charity. Sadly, after this time, the side effects of the Parkinson’s became increasingly severe, causing Shirley’s health to deteriorate rapidly. Shirley died on 14 July 2002. She was 60 years old. Shortly before her death, delighted by the progress the charity was making, she said: ‘My greatest reward has always been knowing that my little boy did not die in vain’.

PAULINE COLLINS

Photo: Stuart Gill

‘The first time I saw Shirley Nolan was in the winter of 1978. We’d not long moved into our house and I was playing with the children on the floor when I became aware of an item on the TV news. There was Shirley talking about her beautiful, brave boy Anthony who was just a year older than my son Nic.

Pauline Collins, OBE, was involved with Anthony Nolan from the early days. As the charity’s first patron, she was instrumental in raising publicity around the ambitious donor recruitment drive of 1986. This campaign led to an incredible 100,000 people joining the Anthony Nolan register in a six-week period.

Pauline kicks off the recruitment drive for 100,000 people to join the Anthony Nolan Register 26

Shirley was outlining her struggle to keep Anthony alive, while searching for a donor. She talked vividly and memorably about the

creation of a register of donors that would help children and adults like Anthony. I was absolutely bowled over by Shirley’s courage and optimism in the face of terrible odds and that night I wrote to her with a donation. I’d become well known through my role as Sarah Moffatt, the maid in the TV series Upstairs, Downstairs, so I also offered myself as a ‘face’ if it would be of any help.

‘I WAS FILLED WITH ADMIRATION FOR THIS EXHAUSTED BALL OF ENERGY WHO WAS JUGGLING RUNNING A CHARITY WITH CARING FOR A VERY SICK CHILD.’ PAULINE COLLINS

compassionate woman, agreed to become the charity’s Royal Patron in 1991. My role as Patron was to do as many media interviews as possible, to go along to the fundraisers and donor recruitments and to attract as much notice and support as I could. I recorded a national TV appeal in 1985 which was a success but the really big breakthrough came the following year. Pauline showing her blood sample which was collected when she signed up

Shirley Nolan and Pauline Collins celebrate the charity’s 10th anniversary

We met a couple of days later and immediately Shirley felt like an old friend. Like me, she trained as a teacher of English and Drama and as we chatted I was filled with admiration for this exhausted ball of energy who was juggling running a charity with caring for a very sick child.

people; Shirley, Dr James and Marion Matthews, the amazing Appeal Secretary who worked herself into the ground eight days a week for many years.

She introduced me to Dr David James who pioneered tissue typing for the charity. It was only then that I realised this very ambitious appeal was run from a tiny room at Westminster Hospital by only three

I only saw Anthony once, through a glass window at the hospital. He was so ill, poor little fellow.... but he was sleeping and very peaceful. Around this time I was asked to be Patron and was honoured to accept. I remained so until HRH The Duchess of Kent, a wonderful and

Every year, in May, the Round Table hosts a massive weekend conference where they choose a charity to support and I was invited to attend and speak on behalf of Anthony Nolan. It was a fantastic weekend. We stayed in a holiday camp near Great Yarmouth and I had bought a halterneck white dress, just like Marilyn Monroe. Or so I thought! I faced these hundreds of men and talked my socks off and my heart out to make them choose Anthony Nolan...... and they did! The Round Table not only provided financial support, they also co-ordinated the donor drives which resulted in the spectacular 100,000

‘ANTHONY NOLAN IS A REMARKABLE ORGANISATION THAT HAS BLOSSOMED INTO A WORLDWIDE FORCE.’ PAULINE COLLINS

who, after a life of pain, was now at peace. My husband John and I went to his funeral which was beautiful and uplifting and featured daisies, his favourite flower. Shirley, her mother and brother came back to our house for a meal and a rest before flying back to Australia that evening. As we sat round our kitchen table, that bright, sunny afternoon turned out to be one of stories, laughter and such easy company. A gentle end to a difficult day.

Pauline Collins opening the Anthony Nolan Magic Roundabout Garden at the 1994 Hampton Court Palace Flower Show. The garden was awarded a silver medal and attracted over 200,000 visitors and almost £10,000 in donations

additional people signing up to the register in 1986. I wanted to show how easy it was to join the register, so I gave the first blood sample to kick off the campaign. Sadly, I’ve never been called upon… I’m a bit

too old now! But, it’s still a good feeling to know you’ve done your bit. In 1979, Anthony gave up the fight. I think Shirley, who had tried so hard to find that elusive donor, was in the end glad for her brave little boy

Anthony’s was a short, tough life but none of us knew that day what a farreaching legacy that child would leave. Today, under the long-time and excellent stewardship of Chairman Simon Dyson, Anthony Nolan is a remarkable organisation that has blossomed into a worldwide force. It is a vision made reality by the courage of a very sick young child and the magical energy and love of his mother, that dynamo Shirley Nolan.’

FROM BROOM CUPBOARD TO STATE-OF-THE-ART LABS The creation of the world’s first bone marrow register occurred in the most basic room imaginable, a ‘broom cupboard’ in the basement of Westminster Hospital. In December 1973, Shirley Nolan travelled from Adelaide to London with her son Anthony after learning of Simon Bostic, the first person in the world to receive bone marrow from an unrelated donor. Shirley hoped that her desperately ill son could receive a similar, lifesaving transplant. At Westminster Hospital, she met Dr David James, a member of the team pioneering the tissue typing programme. Finding a donor whose tissue type exactly matched that of the patient was essential for the transplant to be successful. The science behind transplants was very much in its infancy. Dr James was already well-established in his career and had a fulltime position as Director of the Blood Transfusion Service. He could, however, see the enormous potential

Dr David James, who co-ordinated the first Donor Testing programme at Westminster Hospital

of tissue typing and bone marrow transplantation. He spent as much of his spare time as possible trying to improve understanding of the science around this revolutionary area. Dr James explained to Shirley that although thousands of people were willing to donate their bone marrow, a lack of funds meant the complex and time-consuming work to tissue type them had ground to a halt. Even if the money could be found, Dr James said a proper system to record the tissue type of potential donors was required, so that this

information could be readily available whenever a patient needed a transplant. It was at this moment that Shirley Nolan had a vision to create the world’s first bone marrow register. In January 1974, Shirley launched the Anthony Nolan Bone Marrow Appeal to raise awareness of Anthony’s condition and raise the £3,000 required to employ a full-time technician for one year. News of Anthony’s plight quickly spread around the world and donations came flooding in, allowing two technicians to be 29

trained, the tissue-typing of potential donors to restart, and – in a ground-breaking move that would be copied by countless other countries around the world - the creation of the Anthony Nolan Register.

one lab with limited bench space and the most basic laboratory equipment which was found through donation or borrowed from other hospital departments. There was also a tiny office in an alcove under the staircase.

The initial laboratory, where the tissue typing was carried out, could not have been more different to the spacious, state-of-the-art laboratories that opened in 1990. This tiny room – best described as a large broom cupboard - consisted of

The register was equally primitive. In 1974, personal computers had not been commercially manufactured – the first Apple computer would not be created for another two years – so donor records were kept on index cards in a shoebox.

Despite these simple surroundings, the small team, led by Dr James who became the charity’s Medical Director, worked tirelessly to tissue type as many potential donors as they could. By 1975 more than 1,500 people had been added to the register. By 1976, this had increased to 6,710 people. As the workload to tissue type the growing number of samples increased, it became necessary to look for new accommodation.

ROOM FOR GROWTH

Anthony Nolan’s Technical Director, Susan Cleaver with Des Brady, Chief Administrator, outside St Mary Abbots Hospital

St Mary Abbots Hospital in Kensington, West London, had some old pathology laboratories which were closed and unused. In 1976, Shirley and Dr James – seeing the potential of the site – began work to raise the necessary funds to allow the move to go ahead. As Dr James still had a full-time position at Westminster Hospital and realised he would not be able to dedicate enough time to running the labs on

a new site, he appointed Dr Ann White as the new Head of Laboratories. Dr White was also a pioneer in tissue typing and was interested in exploring the potential of bone marrow transplants for patients with leukaemia. In September 1978, after two years of tireless campaigning and the support of many kind individuals and organisations, the new facilities were officially opened and named the Anthony Nolan Laboratories.

â&#x20AC;&#x2DC;THE ANTHONY NOLAN LABORATORIES EXIST, THE TECHNICIANS ARE TRAINED AND WORKING, THE LIFELINE IS STRONG AND WE ARE NOW FULL OF HOPE FOR FUTURE GENERATIONS.â&#x20AC;&#x2122; SHIRLEY NOLAN

The international team assembled for the 1986 recruitment drive

The new labs provided much more space and, being above ground, daylight too. Helped by the improved facilities, the register grew year on year. By the middle of the 1980s, more than 50,000 potential donors had been tissue typed and added. In the summer of 1986, John Humphries and Malcolm Thomas, two fathers desperately searching for a donor for their children, approached Dr James with a proposal to recruit 100,000 new donors in six weeks, equivalent to over 16 years work for Anthony Nolan. Thanks to the support of the Round Table, this massive

donor recruitment drive took place and hit the 100,000 target within the timeframe. This unprecedented surge in numbers created a huge logistical challenge but, as usual, everyone at the charity pulled out all the stops. Portable buildings were set up on the site to increase capacity for tissue typing, but extra staff were needed to process all the samples. Following an appeal, tissue typers from Germany, Italy and America volunteered to come to England and help test and catalogue all the samples. Working day and night, seven days a week, the lab teams worked

in shifts to read, type and record every one of the 100,000 samples. It was an incredible achievement which really established the register as a lifesaving resource. In 1987, it was announced that St Mary Abbots Hospital was to be sold for redevelopment. Once more, the charity needed to find a new home. Fortunately, in May of that year, the Round Table adopted Anthony Nolan as its Diamond Jubilee Year Charity and the substantial money raised as a result went towards funding new, permanent laboratories.

A PERMANENT HOME

Chairman Simon Dyson helping build the labs at The Royal Free Hospital The Anthony Nolan Round Table Laboratories

In 1988, The Royal Free Hospital in Hampstead was made aware of the charity’s search for a new home, thanks to John Moxey, a father of two who was being treated for leukaemia at the hospital. As a result of his intervention, The Royal Free generously provided a large piece of land to Anthony Nolan so it could site its laboratories there. In January 1989, Anthony Nolan moved from St Mary Abbots into upmarket portable buildings on the new site, where the 32

Research Institute is today, while the new permanent accommodation was being built alongside. Sadly, John Moxey died later the same year but had taken great pleasure in seeing his plan come to fruition. Anthony Morland oversaw a number of major infrastructure projects over the next few years which strengthened the charity’s work and established Anthony Nolan in the science and research world. In May 1990, the new laboratories were completed

and the charity’s staff finally had excellent working conditions worthy of the world-class work they were undertaking. At the same time, the charity began making plans to build its own Research Institute, to investigate why many apparently perfectly matched transplants failed. The charity was already funding a small Research Department but, even with a committed team of four scientists, it was clear that far more resources would be required if this issue was to

‘THE OFFICIAL OPENING OF THE ANTHONY NOLAN RESEARCH INSTITUTE WAS A MOMENTOUS DAY. IT WAS THE CULMINATION OF FIVE YEARS’ PLANNING, FUNDRAISING AND THE RECRUITMENT OF HIGHLY TALENTED RESEARCH STAFF.’ BRIGADIER ANTHONY MORLAND, CHIEF EXECUTIVE FROM 1989 TO 2003 be sufficiently understood. The charity embarked on a major fundraising initiative to bring this vision to life. In October 1992, after a hugely successful fundraising campaign led by the Round Table to build a new Research Institute, all the charity’s administration was moved to a nearby office development, called Heathgate, which became the Head Office. This move freed up space at The Royal Free site for additional laboratories.

Heathgate, which became the Head Office in 1992

In 1996, the Anthony Nolan Research Institute was finally completed, marking the culmination of five years’ planning, fundraising and the recruitment of highly talented research staff. Anthony Morland worked with Professor John Goldman to recruit Professor Alejandro Madrigal, who was appointed as the Director of the Anthony Nolan Research Institute. The Institute was officially opened on 14 May by the charity’s Royal Patron,

HRH The Duchess of Kent, GCVO who also used the occasion to officially rename the laboratories ‘The Anthony Nolan Round Table Laboratories’ in recognition of the enormous support the charity had received from the Round Table. The main laboratory was dedicated to John Moxey, who had been so instrumental in helping the charity complete its journey from the ‘broom cupboard’ in Westminster to a permanent home in Hampstead, where it remains to this day.

Her Royal Highness The Duchess of Kent and Chairman Simon Dyson signing the Round Table visitors’ book at the opening of the Anthony Nolan Research Institute in 1996 33

JOANNA LUMLEY

Photo: Rankin

‘I can still remember the first time I came across Anthony Nolan’s name. It was 1975, the same year I’d been cast as Purdey in The New Avengers. I was 28 years old.

Joanna Lumley, OBE, was one of the earliest supporters of Anthony Nolan. She was among the first people to sign up to the register and has continued to support the charity’s work ever since.

I’d picked up the newspaper and read the most heartbreaking story about a mother, Shirley Nolan, whose dear little boy, Anthony, was desperately ill. Shirley was frantically searching for a suitable bone marrow donor for her son. It was his only chance of survival. I was so moved by Anthony’s plight that I decided to sign up immediately to the bone marrow register which had been created in his name. When I realised just how easy it was to do this, my support for the cause was firmly established. Joining the register is such a simple act, but with potentially huge benefits for another living person. I felt everyone should know about this important resource. Over the years, I met Shirley Nolan on many occasions as we worked together to publicise the Anthony Nolan Register. I

liked her an awful lot. She was a very brave woman with a special boldness that, I think, can only come from a mother’s love. Shirley made a superhuman effort to establish a comprehensive register – not only to help her son but to save others in a similar situation. In the very early days, she was trying to do so much on her own and was being pulled in so many directions. I think once she’d mounted that particular horse, however, she was damned if anything or anyone was going to throw her off! Sadly, I wasn’t a match for Anthony. Nobody who signed up to the register was. It was tragic that no donor was found in time to save such a delightful little boy. The day of his funeral was unbearably moving. I hoped – as Shirley did – there would come a day when no one else would die due to a lack of a suitable donor. Many years later, I was identified as a possible match for another person who needed a life-saving transplant. I was on a shortlist of four possible

‘I WAS SO MOVED BY ANTHONY’S PLIGHT THAT I DECIDED TO SIGN UP IMMEDIATELY TO THE BONE MARROW REGISTER WHICH HAD BEEN CREATED IN HIS NAME.’ JOANNA LUMLEY

donors. It was like I had been nominated for an Oscar! How many of us, during our time on earth, get the chance to save the life of someone else? And what greater role could there be to play?

Even today, I think it is truly thrilling that we can use a part of our body – a part we won’t miss, a part it won’t hurt us to give – to save another person’s life. Simply by joining the register, or supporting this important cause, you are making a massive contribution to humanity.

Photo: Stephen Pennells

In the event, one of the others on the shortlist was a closer match, so I was not required to donate. Even so, it was an emotional and uplifting moment which reinforced the impact of Anthony Nolan’s work.

Meeting Richard Holman, Laboratory Manager and John Plumpton, bone marrow recipient, during a visit to the charity’s laboratories in 2013

It is quite incredible, 40 years on, to see how Anthony Nolan’s legacy has benefited people all over the world. It brings to mind my favourite quote – one that I carry in my purse at all times: ‘Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.’

Joanna receiving a cheque for over £216,000 from Bruce Bennett, National President of the Round Table in May 1992 35

THE POWER OF THE MEDIA Support from newspapers, TV and radio has played a hugely important role in the success of the charity ever since Shirley Nolan launched the initial appeal to set up the Anthony Nolan register. The charity has continued to work well with the media since that time and has embraced the opportunities offered by the creation of social media, such as Facebook and Twitter.

In 1974, Shirley Nolan approached the media to help publicise Anthony’s personal plight and they responded magnificently. Much of this was down to Shirley’s understanding of the media’s power, as well as her awareness of the emotional strength of Anthony’s story. The doctors and scientists who were working on tissue typing and bone marrow transplants were medical pioneers and Shirley was, in a similar way, a media pioneer. She harnessed the

enormous potential of these communication channels with great skill. This productive relationship between the charity and journalists began even before Shirley had brought Anthony to London. The Adelaide Advertiser, the newspaper in Shirley’s home city in Australia, found out that Shirley was taking Anthony to London in the hope of arranging a bone marrow transplant for him. They wanted to cover the story but Shirley had agreed to Westminster Hospital’s request for a publicity ban, to prevent the hospital’s switchboard being swamped with offers of help. Shirley, with her usual passion and powers of persuasion, offered an interview to the newspaper on the condition that they didn’t run it until she told them they could. It is usual practice for newspaper editors to call the shots but Shirley, as she so often did, got her own way. Shirley had made her first media ally. Once in England, where it became clear the hospital did not have the necessary resources to test potential donors for Anthony or other people in need of a

‘BACK THEN, YOU JUST DIDN’T GET PEOPLE DOING TV APPEALS AND WORKING WITH THE MEDIA IN THE WAY SHIRLEY DID. SHE WAS AHEAD OF HER TIME REALLY.’ LINDA ROBSON

transplant, Shirley had no hesitation in breaking the media ban she’d originally agreed to. She felt she had nothing to lose. Shirley initially began to work with her local newspaper, the Kentish Express, to try and raise funds to set up the world’s first bone marrow register. However, the national media quickly picked up on Anthony’s story and were soon issuing appeals for people to sign up to the register to try and save Anthony’s life. Shirley also struck up relationships with a number of prominent journalists and worked closely with them over many years. One, the Daily Mail columnist Lynda Lee-Potter, became a good friend and they would often meet for lunch so Shirley could update Lynda on Anthony’s condition, the progress of the register and other matters related to the charity. Today, of course, none of this would seem in any way out of the ordinary. In the 1970s, however, for a mother with a desperately sick child to be single-handedly orchestrating such a successful media 37

campaign was nothing short of miraculous. Since that time, Anthony Nolan has worked continuously with the media to highlight the charityâ&#x20AC;&#x2122;s work. Patient appeals continue to be a particularly important way of attracting more people to sign up to the register. The stories of individual patients trying to find a donor who matches their tissue type are very compelling and the charity normally sees a surge in people joining the register after the media have reported on such appeals. Journalists have also shown great interest in the scientific and medical developments which have taken place throughout the charityâ&#x20AC;&#x2122;s history. When the charity pioneered the use of spit kits to replace blood samples, which had previously been required to sign up to the register, the media coverage was significant. Similarly, the launch of the cord blood bank and subsequent cord blood collection centres attracted attention, with TV reporters focusing on the exciting benefits this new procedure could offer.

Patient appeals over the years

As the media has evolved, so has the charity’s approach to working with it. Social media has transformed the way people engage with organisations and Anthony Nolan was quick to adopt the new technology to support its charitable aims. The charity now has tens of thousands of followers for its Facebook page and Twitter profile and online recruitment to the register now accounts for half of all those signing up. In 2012, Anthony Nolan was chosen as one of the charities to benefit from ITV’s Text Santa fundraising show. The partnership raised more than £5m which was shared between Anthony Nolan and

Scientific developments over the years

five other charities. As well as providing the funds to add around 9,000 more people to the Anthony Nolan register, it also showcased the charityâ&#x20AC;&#x2122;s work to millions of people across the UK. This coverage resulted in an increase by almost 850% of people joining the register.

Using Twitter and Facebook to reach new audiences

Anthony Nolan could not have achieved all that it has over the last 40 years without the tremendous support it has received from the UK media. While the communications landscape has changed at a dramatic pace in recent years, the charity will undoubtedly always rely on the power of the media to help support its vital work.

REMEMBERING SHIRLEY NOLAN On 14 November 2002, a memorial service was held for Shirley at St Martin-in-the-Fields church in London. The late Lynda Lee-Potter, OBE – an award-winning columnist for the Daily Mail, became great friends with Shirley and gave a moving address:

‘When I first met Shirley Nolan, her remarkable battle to save her son Anthony was just beginning. She was young, vibrant and full of great joie de vivre, she was driven, optimistic, vital and absolutely sure that, with the help of the rest of us, she would find a donor to save her son’s life. She never did find one but she saved thousands of other children. Shirley was a born fighter. At times she seemed like a heavyweight boxer who was constantly being knocked

down but always managing to hang on to the ropes and pull herself up. You never came away from a meeting with Shirley feeling depressed or full of pity for the mother of a dying son. You came away suffused with fight and optimism. I saw her exhausted, weary and angry but I never saw her defeated. I spoke to her just a few hours after Anthony died and she said: ‘He was always so happy, he had such tremendous courage and he generated a flame of love and respect. He never gave in. Now all I hope is that money will continue to be raised so that lives can be saved. All I ask is that Anthony’s little suffering life will mean something, will have a purpose. There’s got to have been a reason for it all’. Her hopes came true and today Anthony Nolan is supported by thousands of donors and friends who loved Shirley and were inspired and strengthened by her. She was the most remarkable woman I have ever met.’

Lynda Lee-Potter at Shirley’s memorial service

ANONYMOUS LETTERS BETWEEN PATIENTS AND DONORS

‘WHILST THE PROCEDURE TOOK ONLY 20 MINUTES, THAT CREATED A LIFETIME FOR ME AND HAS ENABLED ME TO ENJOY THE LOVE OF MY FAMILY AND FRIENDS FOR A TIME THAT I NEVER THOUGHT I WOULD HAVE. WHOEVER YOU ARE, WHEREVER YOU ARE, THANK YOU.’ BONE MARROW RECIPIENT

‘I’M SO GLAD WE MATCH. MY LITTLE BROTHER IS WONDERING WHETHER I WILL SPEAK GERMAN AFTER THE TRANSPLANT, THIS WOULD BE QUITE USEFUL IF I EVER VISIT GERMANY.’ YOUNG BONE MARROW RECIPIENT 43

SECTION TWO

‘IT’S AN INDESCRIBABLE FEELING, MEETING THE PERSON WHOSE LIFE YOU HAVE SAVED. I REMEMBER THINKING THAT IT DOESN’T MATTER WHAT I DO WITH THE REST OF MY LIFE. AS A LEGACY TO LEAVE, THIS IS AS GOOD AS IT GETS.’ NORMAN GRIMES, BONE MARROW DONOR

Reunited 30 years on: Joanna Ciruk and her bone marrow donor Norman Grimes

Photo: Peter Zarko-Flynn

LIFESAVING SUPPORT FROM THE ROUND TABLE The National Association of Round Tables of Great Britain and Ireland, a voluntary organisation for young men between the ages of 18 and 45, has been helping Anthony Nolan since the charity was created. This long relationship, which continues today, has raised millions of pounds to support Anthony Nolan’s lifesaving work. After arriving in England with Anthony, Shirley Nolan rented a small, run-down house in Thanet, Kent, to use as a temporary base while Anthony was being treated at Westminster Hospital. In 1974, when Shirley started the appeal to get the Anthony Nolan Register off the ground, she began by asking for help in her local community. She was immediately supported by members of the Thanet Round Tables, in Ramsgate, Margate and Broadstairs. The Tablers – as members are known – were so moved by Anthony’s story they invited Shirley to speak

Shirley Nolan receives the charity’s first computer thanks to the Round Table

Volunteers working on the first Chesham Round Table appeal in 1975

Pauline Collins publicises the 1986 Round Table recruitment campaign

to the Broadstairs Round Table, the first female guest speaker to address the group for eight years. Her passion for Anthony’s plight and commitment to set up a donor register won the Tablers over and they raised

more than £20,000 towards Anthony’s appeal. They also helped Shirley organise the first donor recruitment clinic at Margate Hospital. As word of Shirley’s work spread, Round Tables in High Wycombe, Chesham

and Hemel Hempstead offered support. Under the direction of Dr David James at Westminster Hospital, they would take turns to advertise and run a donor session in their area. Dr James would arrange the

dispatching and collection of blood syringes and donor forms and, in the evenings, Tablers would make their premises available for the donor session. Support from the Round Table continued throughout the 1970s. In 1977, the Round Table’s 50th anniversary, members chose Anthony Nolan as the organisation’s Charity of the Year. As a result of the fundraising, a total of £120,000 was raised which helped provide a solid foundation for the Anthony Nolan Register. However, it was the help from the Round Table in the 1980s which truly transformed the register into an internationally recognised resource. In 1986 it was proposed that, in order to increase the chances of suitable matches being found for patients needing a lifesaving transplant, 100,000 new people should be recruited to the Anthony Nolan Register in a six week period. Given it had taken 12 years to recruit 74,000 potential donors, this could have been considered an impossible task to achieve in a short space of time. 48

A Tabler gives blood to join the Anthony Nolan register

However, that year, the Round Table had again chosen Anthony Nolan as its Charity of the Year for its Diamond Jubilee Year in 1987/8. Simon Dyson – who would later become the Chairman of Anthony Nolan – was the Round Table’s National Community Service Liaison Convener. In addition to raising funds the following year, he saw an opportunity to do something extraordinary. He persuaded the individual Round Tables around Great Britain and Ireland to

organise the clinics to take the blood samples from the new donors and to help the charity reach this ambitious target. In 1986, technology was such that the blood samples taken from volunteers needed to be fresh to analyse the tissue type. This meant that the arrival of blood samples had to be carefully planned so that those coming from distant parts of the country could be analysed before they were too old. Each Round

‘ANTHONY NOLAN IS INCREDIBLY FORTUNATE TO HAVE HAD SUCH CONSTANT SUPPORT FROM THE ROUND TABLE THROUGHOUT ITS 40 YEAR HISTORY. TABLERS HAVE BEEN WITH US EVERY STEP OF THE WAY AND I HAVE NO DOUBT THAT ANTHONY NOLAN WOULD NOT BE HERE TODAY WITHOUT THE ROUND TABLE.’ SIMON DYSON, CHAIRMAN OF ANTHONY NOLAN 1986, which allowed search reports to be produced in a matter of minutes. By 1987, the Round Table’s 60th anniversary, the vast majority of Tables had either run a donor recruitment clinic or were keen to do so at the earliest opportunity. The Association now wanted to raise the money to preserve the future of the lifesaving work its Tablers had contributed so much towards. Samples from a Round Table clinic are delivered to St Mary Abbots Hospital

Table had to be allocated a day for their clinic, rather than choosing it themselves. Everyone responded magnificently, with support from Woolworths, Norwen and Holst, NatWest Bank and Red Star Parcels, and the project was run like a military exercise; timetables operated perfectly and the laboratories worked flat out 24 hours a day for six weeks. By holding donor clinics across the whole of the United Kingdom, the number of potential donors and the chance of matching

a particular patient’s tissue type was dramatically increased. By spreading the geographical make-up of the register, there was also an increased chance of finding a donor for a patient with an unusual tissue type. The campaign changed the Anthony Nolan Register, and the charity, forever. In order to help the charity manage its newly expanded donor database more effectively, the Round Table in Kensington bought the charity its first computer in

In its Diamond Jubilee Year, the Round Table raised one million pounds for Anthony Nolan which helped to fund permanent laboratories on a new site at the Royal Free Hospital in Hampstead. Volunteers from Hemel Hempstead Round Table even helped to move freezers, cabinets and equipment into the charity’s new labs when they opened in August 1990. When Anthony Nolan launched an appeal in 1992 to build a research institute to investigate ways to increase the success rate of transplants, the Round Table began fundraising for the charity once again and swiftly contributed more 49

than £350,000 towards this vital new facility, which opened in 1996. Forty years on from the Thanet Tablers providing the charity with initial support, the Round Table continues to help Anthony Nolan in its lifesaving work. The Association of Ex-Round Tablers, known as the 41 Club, nominated Anthony Nolan as its Presidential Charity Partner for 2014. The partnership will, once again, help to raise the charity’s profile, demonstrate the incredible commitment of the Round Table to Anthony Nolan’s work and raise significant funds to support the charity’s lifesaving work.

The certificate given to all the 100,000 donors recruited during the 1986 campaign

‘HER FAMILY SAID THOSE THREE EXTRA YEARS OF LIFE WERE SO PRECIOUS FOR ALL OF THEM.’ ALLEN FORSYTH

THE TABLER WHO DONATED Allen Forsyth was a member of Ashbourne Round Table, in Derbyshire, from 1972 to 1988. He donated his bone marrow in 1992 and now helps to run an Anthony Nolan Friends Group in the historic market town.

Allen Forsyth

‘To mark its 50th anniversary in 1977, the Round Table decided to donate its charity funds from that year to a single cause. Four very worthy charities gave presentations about their work at the AGM. The final presentation was made by Shirley Nolan where she told us about her son Anthony and the work she’d done to set up a register in his name. Her speech was so compelling and emotional that you could have heard

a pin drop. Needless to say, the decision to support Anthony Nolan was unanimous! I joined the register at a clinic which Ashbourne Round Table organised in the 1970s. I didn’t think much more of it until the autumn of 1991 when I received a letter asking me to donate a second blood sample for more in-depth analysis. Further tests followed and in early 1992 I donated bone marrow to a

young woman, aged 18, who was suffering from Acute Myeloid Leukaemia. Sadly, three years after the transplant, my recipient died from pneumonia. But her family wrote to me to thank me for donating and said those three extra years of life were so precious for all of them. That’s why I still support Anthony Nolan today, through the Friends Group. The charity makes a real, positive difference to so many people’s lives.’

AN EARLY MATCH

In 1981, Norman Grimes was one of the first people from the Anthony Nolan Register to come up as a match for a patient in need of a transplant. Joanna Ciruk had been diagnosed with severe aplastic anaemia – a bone marrow disorder – and was given only weeks to live.

NORMAN’S STORY: ‘In 1975, I was working as a lab technician in Beckenham, Kent. Shirley Nolan came to the company and told us about the register she had set up to try and find a match for Anthony. Shirley was an amazing woman and, after she’d finished her incredibly moving speech, I knew I had to join the register. In 1981, I returned from my honeymoon to find a message from a doctor saying I’d come up as a match for someone in urgent need of a bone marrow transplant. 52

Norman and Joanna celebrate with Shirley Nolan in 1983

It was all so new in those days that Hammersmith Hospital didn’t even have a dedicated transplant area, so I stayed on the heart ward. Other patients asked what was wrong with me and I can still remember their surprise when I replied: ‘Nothing. I’m donating bone marrow to help save another person’s life.’ The nurses were all fascinated by it too. In January 1982, I found out that Joanna was the person who’d received my bone marrow and that she wanted to meet me once she was fully recovered.

That first meeting, in October 1982, was incredibly emotional. It’s an indescribable feeling, meeting the person whose life you have saved. I remember thinking that it doesn’t matter what I do with the rest of my life. As a legacy to leave, this is as good as it gets. I now run an Anthony Nolan Friends’ Group in Kent, trying to recruit as many young people as possible to the register. I’m able to tell them first-hand what an incredible difference that simple step can make to another person’s life.’

‘THE COMPLETE RECOVERY OF PATIENTS LIKE JOANNA HAS NOW ESTABLISHED BEYOND DOUBT THAT THE USE OF UNRELATED BONE MARROW DONORS MAKES MEDICAL SENSE.’ DR DAVID JAMES, MEDICAL DIRECTOR, ANTHONY NOLAN. 1982

JOANNA’S STORY: ‘When I was 18, I started developing bruises and having nose bleeds. At first, it didn’t seem anything to worry about but I quickly became seriously ill. I was diagnosed with severe aplastic anaemia and had to be given a number of blood transfusions to stop my immune system from failing completely. Even with the transfusions, doctors told my parents that I only had weeks left to live. The doctors at Hammersmith Hospital decided my only hope was to look for a bone marrow donor. It’s amazing that Anthony Nolan managed to find someone suitable. The register wasn’t very big in those days and Norman was the only one of the 34,000 possible donors who turned out to be a match for me. I had the bone marrow transplant in July 1981. I was the first person with aplastic anaemia to receive a transplant from an unrelated donor. It was all so experimental that my case was written up in the British Medical Journal!

It took me nine months to recover, because I’d been so ill. But, once I was better, I was able to return to college where I completed a degree in Humanities.

It was so moving to meet Norman once I had recovered. If he hadn’t made the decision to join the register, I wouldn’t be here today. I owe my life to him.’ 53

OVERCOMING INTERNATIONAL BOUNDARIES

Professor John Goldman, a world expert in stem cell transplants for leukaemia, became Anthony Nolan’s Medical Director in 1988. In 1990 he established the World Marrow Donor Association, which recognised the role of Anthony Nolan at the forefront of the global fight against blood cancer.

‘I first became involved with Anthony Nolan in 1987 while I was exploring the role of bone marrow transplantation as a possible cure for patients with chronic myeloid leukaemia. Dr David James, who was the charity’s Medical Director at that time, used to come to my monthly unrelated donor identification meetings at the Hammersmith Hospital in London. He brought with him a series of cards, which had the tissue typing details of every person on the register, and we would see if there were any who matched the patients I was trying to treat. In 1988 Dr James stood down and I took over the part-time role as Anthony Nolan’s Medical Director. One of our first tasks was to transfer the typing data to a computerised record which could be searched more rapidly. While the Anthony Nolan register was the first of its kind in the world, it had been the success of the donor recruitment drive in 1986 which had made it an important medical resource. It had been a truly fantastic and

revolutionary achievement. In 1998 we all agreed that the Anthony Nolan register should be made accessible internationally. We felt it was essential that our donors were available to every patient who needed a transplant, regardless of nationality, ethnicity, religion or any other factor. This initiative then formed the model for similar developments in other countries worldwide. By 1990 we had recognised the multiple challenges involved in collecting stem cells from normal volunteers and transferring them to patients living elsewhere. Together with Jon van Rood, the renowned Dutch immunologist, we therefore established the World Marrow Donor Association (WMDA). Edward Donnall Thomas, who developed bone marrow transplants for leukaemia in Seattle and was subsequently awarded a Nobel Prize for his work on blood and marrow stem cell transplantation, heard of our plans and became a strong supporter of our initial efforts. The main purpose of the WMDA was, and still is,

‘WE FELT IT WAS ESSENTIAL THAT OUR DONORS WERE AVAILABLE TO EVERY PATIENT WHO NEEDED A TRANSPLANT, REGARDLESS OF NATIONALITY, ETHNICITY, RELIGION OR ANY OTHER FACTOR.’ PROFESSOR JOHN GOLDMAN

The Royal College of Physicians, venue for the WMDA conference 2014, hosted by Anthony Nolan

to standardise medical, financial, ethical and logistical aspects of international transplants. There were certainly plenty of issues on which to focus our attention. For example, the actual technology for carrying out transplants was still relatively new. Transporting bone marrow or blood stem cells across international borders was an unfamiliar practice still viewed with suspicion by officials in many countries. The issue of who would pay for the collection

and transportation of the stem cells was still unclear. These were just some of the many areas we needed to formalise. The WMDA’s original guidelines were published as the lead article in the scientific journal Blood, which showed just how revolutionary Anthony Nolan’s work was at that time.

knowledge have progressed, the guidelines have changed with time. Today, the membership of the WMDA includes 71 donor registries, 140 cord blood banks, 350 donor centres, and 1,259 transplant hospitals from 48 different countries in six continents.’

Since then, the WMDA has continued to define and recommend best practice in blood stem cell transplants. As medical and scientific 55

‘I THINK IT IS TRULY THRILLING THAT WE CAN USE A PART OF OUR BODY – A PART WE WON’T MISS, A PART IT WON’T HURT US TO GIVE – TO SAVE ANOTHER PERSON’S LIFE.’ JOANNA LUMLEY

Joanna meeting Daniel Eggleston, Anthony Nolan scientist and bone marrow donor during a visit to the charity’s laboratories in 2013

Photo: Stephen Pennells

EARLY FUNDRAISING

Anthony Nolan has continually developed new and innovative ways to raise money to support its lifesaving work, while also raising the charity’s profile. Some of the UK’s most prestigious venues, including Hampton Court, Sunningdale Golf Club and the London Palladium have hosted memorable events for the charity.

in January 1974. In fact, fundraising was the first activity Shirley undertook after pledging to raise the £3,000 required to pay for a laboratory technician to tissue type donor samples for the first 12 months.

Fundraising has been an essential part of Anthony Nolan’s work since Shirley Nolan created the register

Anthony Nolan benefits from the generous support of thousands of individuals every year. People across the UK organise events, hold street collections and set themselves tough personal challenges to raise funds for the charity’s lifesaving work. Many of them are patients who are celebrating

One of the world’s most famous theatres, the London Palladium, has been an important venue for Anthony Nolan’s fundraising efforts. In December 1991, the charity held a Gala Variety Show at the Palladium. The entertainers included the magician Paul Daniels, the cast of the popular Channel 4 sitcom

Drop The Dead Donkey, and comedian Les Dennis. The event was a great success and further shows were held at the Palladium in 1997 and 1998 attracting the support of stars including the singer Charlotte Church, and comedians Bobby Davro, Bradley Walsh and Stan Boardman.

their lifesaving transplant or friends and family raising funds in memory of their loved ones. In recent years increasing numbers of supporters have taken out regular gifts to Anthony Nolan, helping the charity build a secure and growing funding base which enables it to plan for the future. In addition to this valuable individual support, the charity has run a number of high profile events to raise awareness of the charity’s aims while encouraging fundraising on a major, co-ordinated scale.

‘THE LIFESAVING WORK THE CHARITY PERFORMS IS REMARKABLE. THE PEOPLE AT ANTHONY NOLAN REALLY CARE ABOUT WHAT TAKES PLACE, FROM THE LIVES IT SAVES DOWN TO THE GOODY BAGS THAT ARE GIVEN OUT AT A FUNDRAISING GOLF DAY.’ ANGUS FRASER, MBE, FORMER ENGLAND CRICKETER

7th Golf Classic, 1998

The Anthony Nolan Golf Classic was first held in 1992. It has now been running for over 21 years, and is held at the world famous Sunningdale Golf Club in Surrey. In total this one event has raised more than £250,000. Celebrity players over the years have included cricketers Angus Fraser, John Emburey, and Mark Ramprakash and the comedian Frank Carson. As well as being a great opportunity to meet existing and potential supporters, it has also resulted in some exciting new corporate partnerships for the charity.

The Royal Horticultural Society Hampton Court Palace Flower Show also provided an excellent opportunity for Anthony Nolan to engage with new supporters. The charity had a fundraising stall at the Flower Show in 1991. It was such an outstanding success that, in 1992, the charity decided to make its debut as a garden exhibitor. With the help of Squire’s, the garden designers, it created the Anthony Nolan Garden of Reflection, which depicted a garden as seen through the eyes of a small child. The garden featured giant toadstools and trees

which looked like trolls. The event was an incredible success. The Garden of Reflection won the Gold Award and Shirley Nolan and the charity’s Chairman, Simon Dyson, were presented to HM Queen Elizabeth II at the event. Anthony Nolan went on to create a garden for the show annually until 1999. The charity’s gardens won a total of two Tudor Rose awards, five Gold Awards, and two awards for the most innovative garden at the show. Fundraising at the show also brought in tens of thousands of pounds in donations.

Joanna Lumley and Anthony Morland at Hampton Court in 1991 The Anthony Nolan Garden of Reflection 59

YOUNG, HEALTHY AND MALE

Young men are an important audience for Anthony Nolan, as they are ideal candidates for joining the register. Healthy young men tend to produce more stem cells than anyone else, which makes them the preferred donor when more than one match exists.

Young men between the ages of 16 and 30 are far more likely to be chosen by doctors to donate their blood stem cells to a patient in need of a lifesaving transplant, particularly where there is more than one potential match. However, there continues to be a shortage of potential donors in this age group compared to women and older men. While encouraging numbers of young men have already signed up to the Anthony Nolan register, it remains a priority for the charity to recruit more to meet growing demand. In the 1970s, after Shirley Nolan protested outside Downing Street about

Soldiers line up to join the Anthony Nolan register in 1976

the lack of funding for creating a national bone marrow register, many young policemen from the Metropolitan Police signed up to express their support for Anthonyâ&#x20AC;&#x2122;s plight. Members of the British Armed Forces have also been very supportive since as far back as 1976, and have helped swell the ranks of healthy young men on the register. Anthony Nolan formalised the close partnership with the armed forces in August 2011 when military representatives came to the charityâ&#x20AC;&#x2122;s head office to explore ways they could help the charity save more lives. This was done with the help of Lt Col Dougie Allen, from the British Army who had received a successful blood stem cell transplant in August 2010. As a result the armed forces now run recruitment clinics, which have even been held for troops stationed in Germany. Sport has proved a powerful way to get the attention of young men and the charity has been well supported by some of the countryâ&#x20AC;&#x2122;s leading sportsmen from

‘ANTHONY NOLAN DOES NOT JUST ENABLE LIFESAVING BONE MARROW TRANSPLANTS FROM ITS EVER GROWING REGISTER OF DONORS, IT ALSO GIVES HOPE TO THOUSANDS OF PEOPLE SUFFERING FROM BLOOD CANCERS WHO ARE ENTIRELY RELIANT ON FINDING THE RIGHT MATCH.’ ANDREW STRAUSS, OBE, FORMER ENGLAND CRICKETER cricket, rugby, boxing, golf, football and tennis. The cricketers Andrew Strauss and Mark Ramprakash and rugby player Richard Hill have all used their benefit years to financially support Anthony Nolan, as well as helping raise the profile of its work. They each remain committed to supporting the charity to this day. At the Fashion with Balls event in 2004, nine members of England’s World Cup-winning rugby squad took to the catwalk alongside models Sophie Anderton and Jodie Kidd. The event, attended by more than 1,000 guests including Zara Philips, raised more than £150,000 and increased awareness about the need for more young men to sign up to the register. Liverpool goalkeeper, Brad Jones, became a prominent supporter of Anthony Nolan after his own son, Luca, was diagnosed with leukaemia. Sadly, Luca died on 18 November 2011 at the age of six. Brad, along with his girlfriend, model Dani Lawrence, continue

Brad Jones and son Luca with Dani Lawrence

to be active supporters of the charity’s work and to highlight the importance of more young men signing up to the register so other young children have a chance of survival. Of course, not all young men are sports fans and Anthony Nolan has also run a number of high profile campaigns specifically targeted at other areas which interest young men. In 2011, the charity launched a campaign called GET10, which aimed to add 10,000 young men to the register. In the event, more

than 11,000 young men rose to the challenge. Billy Dunning from Chigwell in Essex became the first of the GET10 recruits to donate his blood stem cells to a patient in need of a transplant. Billy joined the Anthony Nolan register in September 2011 after the charity held a recruitment event at his workplace, Allen & Overy. In May 2012, at the age of 24, Billy came up as a match and donated his cells. He said: ‘I didn’t know much about Anthony Nolan beforehand but when

Billy Dunning, the first GET10 recruit to donate his stem cells

Charlie Brooker, who recorded a short online recruitment film

they came to my office, my colleague signed up and suggested I did as well. I read all the information and because it was so quick and easy – I only had to give a small saliva sample – I decided to sign up too. When Anthony Nolan told me I was a match, I was really pleased. It felt great knowing that I’d be helping to save someone’s life.’

YouTube and Twitter and the reaction was unprecedented in the charity’s history. Within the first 24 hours, the video was watched by more than 17,000 people and there were 17,500 hits to Anthony Nolan’s website, compared to a usual figure of 1,000 hits per day at the time.

London encouraging young men, particularly those from black, Asian and minority ethnic groups, to join the Anthony Nolan register. Two thousand young men rose to the challenge and signed up as a result. The grant also allowed 11,000 additional people to be added to the register.

Later in 2011, comedian Hardeep Singh Kohli fronted a two week campaign called ‘Man on a Mission’. Thanks to a grant of £619,000 from the Jack Petchey Foundation, which supports young people, Hardeep travelled around Birmingham and

Following on from the success of GET10, Anthony Nolan launched a monthlong campaign in August 2013 called GET MEN. The campaign used news stories, online content and social media activity to focus on the need for

In June 2011, the irreverent TV critic Charlie Brooker recorded a short provocative film highlighting the need for young men to join the Anthony Nolan register. He posted the video on 62

‘THINK ABOUT THE FRIENDS YOU COULD GET DOWN THE PUB. ‘WHAT DID YOU DO LAST WEEK?’ ‘I SAVED SOMEONE’S LIFE. BUY ME A BEER.’ HARDEEP SINGH KOHLI, COMEDIAN

more male donors. The campaign generated over 100 pieces of coverage and had a clear impact on online applications, significantly raising the ratio of men signing up online. It is often said that young men are notoriously bad at thinking about their own health. However, it seems clear that, having joined the Anthony Nolan register, many young men have shown that they are willing to think about the health of others. The charity, with the support of a wide range of role models for young men, continues to work to increase that number even further.

ANONYMOUS LETTERS BETWEEN PATIENTS AND DONORS

‘IT WAS MY ABSOLUTE PLEASURE TO HELP YOU AT A DIFFICULT TIME. YOU WILL ALWAYS HOLD A SPECIAL PLACE IN MY HEART AND I WILL KEEP YOU THERE FOREVER.’ STEM CELL DONOR

SECTION THREE

‘A BONE MARROW TRANSPLANT PAVED THE WAY FOR MY DONOR TO SAVE MY LIFE. THE IMPACT OF THIS UTTERLY SELFLESS ACT SPURRED ME ON TO URGE ALL ARMED FORCES PERSONNEL TO JOIN THE REGISTER - AND TO SAVE A LIFE. THE RESULT HAS BEEN HUMBLING.’ LT COL DOUGIE ALLEN

Soldiers line up to join the Anthony Nolan register

Photo: Stephen Pennells

THE BONE MARROW SUPER-MUM

Fran Burke and sons in 2013

Fran Burke was diagnosed with Chronic Myeloid Leukaemia (CML) in 1991 and became a patient of Professor John Goldman, who was Anthony Nolan’s Medical Director at the time and a world expert in stem cell transplants for CML. While battling leukaemia, Fran was also determined to start a family. This is her incredible story. 68

‘At the start of the 1990s, life was great. I was working at the computer firm IBM, where I met my wonderful husband, Adrian. We had our whole lives ahead of us. Then, in 1991, my world was turned upside down when I was diagnosed with Chronic Myeloid Leukaemia, or CML as it is commonly called. I was told my only chance of survival was a bone marrow transplant, but the treatment would make it near impossible

for me to have children. All I had ever wanted in life was to be a mum, so this news was harder for me to face than the leukaemia diagnosis. I wanted to delay treatment so I could have a child but most doctors were totally dismissive of the idea. I was introduced to Professor John Goldman who asked me: ‘On a scale of one to ten, how important are children for you?’ I think he was a little taken aback when I answered

‘I WAS TOLD MY ONLY CHANCE OF SURVIVAL WAS A BONE MARROW TRANSPLANT, BUT THE TREATMENT WOULD MAKE IT NEAR IMPOSSIBLE FOR ME TO HAVE CHILDREN.’ FRAN BURKE

‘Eleven!’ Professor Goldman was the first consultant who really understood my desire to postpone treatment and start a family. He fully explained the risks involved but said, if I was able to conceive within a few months, he would support me in my decision. Amazingly, I fell pregnant straight away and, in 1992, gave birth to my son, Matthew. However, my dream was always to have two children. So, a few weeks after Matthew was born, I took him to meet Professor Goldman. That’s when I mentioned I wanted to delay treatment for a bit longer so I could try for another child. I think Professor Goldman was less happy the second time, but he still respected my choice as an adult. He explained, in great detail, the potential risks involved in delaying treatment. He told me if I was not able to conceive quickly, we needed to concentrate on the transplant. Incredibly, luck was on my side again, and I fell pregnant straight away. In 1993, I had my second son Sebastian. My transplant went ahead in 1995 and the procedure

was a great success. Later on, I had the good fortune of meeting my donor, who has since become a great and special friend. In 2002, Anthony Nolan’s Chairman, Simon Dyson, approached me and asked me to become a Trustee of the charity. I was very honoured but also rather nervous about taking on such a serious responsibility. But the charity had given me the chance of life and I knew that, if there was anything I could do to help others in the

same situation, I had to do it. Professor Goldman is now a Trustee, so we still get to see each other regularly. Looking back, I appreciate just how lucky I’ve been. I know that my course of action was highly unconventional and carried risks. But, thanks to the expertise and support of Professor Goldman, the amazing work of Anthony Nolan and the generosity of my donor, I fulfilled my dream of having a wonderful family and lived to tell the tale!’ 69

ROYAL PATRONAGE

With Lennox Lewis at a fundraiser in 1992

On 15 May 1991, Her Royal Highness The Duchess of Kent opened the new Round Table Anthony Nolan Research Centre. She displayed a close knowledge of, and interest in, the charity’s lifesaving work. Such was her impact on everyone who was present at the opening ceremony that Simon Dyson, Anthony Nolan’s Chairman, wrote to The Duchess, asking if she might consider honouring the charity by becoming its Patron. 70

In the Anthony Nolan laboratories in 1991

On 2 December 1991 – which would have been Anthony Nolan’s 20th birthday – the charity was informed that Her Royal Highness would be delighted to undertake the office of Patron. From that time, the Duchess of Kent has taken a keen interest in the charity’s work. On 1 December 1992, The Duchess hosted a reception at Armoury House, the Headquarters of The Honourable Artillery

Company, where she met a number of donors and patients. Anthony Morland, the charity’s then Chief Executive, introduced The Duchess to Fran Burke. Fran, who is now a Trustee of Anthony Nolan, was awaiting a transplant for chronic myeloid leukaemia and had just had her first son, Matthew. As a result of their conversation, The Duchess of Kent struck up a friendship with Fran which endures to this day.

‘FRAN REMAINS A LOYAL AND COURAGEOUS EXAMPLE OF ALL THAT ANTHONY NOLAN STANDS FOR AND THE COMPASSION AND ASSISTANCE IT OFFERS. COUNTLESS PEOPLE HAVE BENEFITED OVER THE PAST FOUR DECADES WHICH IS A HUGE REASON FOR CELEBRATION.’ DUCHESS OF KENT Fran said: ‘The Duchess is such a kind, compassionate woman. She took such a genuine interest in my situation and she went on to support me through my transplant. We became great friends and met many times. We have remained in contact ever since.’ The Duchess of Kent said: ‘Having met Fran again recently, I was able to reiterate my passion for and commitment to the work of the charity in its 40th year. Fran remains a loyal and courageous example of all that Anthony Nolan stands for and the compassion and assistance it offers. Countless people have benefited over the past four decades which is a huge reason for celebration.’

Fran meets the Duchess of Kent for the first time

Opening the Round Table Anthony Nolan Research Centre in 1991 with Chairman Simon Dyson

Fran and the Duchess meet again one year after Fran’s transplant

CREATING A GLOBAL NETWORK OF SCIENTISTS Professor Alejandro Madrigal joined Anthony Nolan in 1993 to lead its research department. An immunologist who had worked in prestigious research establishments both in the UK and the USA, Professor Madrigal set up a PhD student programme, to train the next generation of researchers.

Professor Alejandro Madrigal

The Anthony Nolan research department was created to study the science of bone marrow and blood stem cell transplants and to understand the genetic and clinical differences that impact upon donor selection. A specific area of research was to reduce the three main complications that can occur following a transplant; relapse, infection and graft versus host disease. Professor Madrigal – whose background in medical science had been gained at a number of prestigious institutions, including Harvard and Stanford Universities in the USA – joined Anthony Nolan in March 1993 and set about building a worldleading research team. The completion of the purpose built Anthony Nolan Research Institute in 1996 provided a major step forward in achieving that goal. The Institute allowed the charity’s research team to be expanded and attracted a number of top scientists from around the world, including: Professor Anthony Dodi from Imperial College London; Dr Ann-Margaret Little from Stanford University, USA; Dr

Linda Barber from the Jenner Institute, Oxford; Professor Steven Marsh from Imperial Cancer Research Fund, London and more recently, Dr Bronwen Shaw from The Royal Free Hospital and Dr Aurore Saudemont from Cambridge University. The Research Institute has led, and been part of, important research projects including AlloStem which is the largest EU-funded project for immunotherapy. Members of the Institute have also led prestigious national and international societies. Since its establishment in 1993 the Research Institute has made substantial contributions in the field, publishing more than 400 papers. It also holds the official database of the World Health Organisation’s Nomenclature Committee for Factors of the human leukocyte antigen system. In addition to the appointment of these experienced scientists, the Anthony Nolan Academic Programme in association with University College London was established. The programme involved supporting and training students who were working

around the world was that these students would often return to their home countries upon completion of their PhD, or would move on to other international institutions. This created an international network of scientists who had strong links to Anthony Nolan.

PhD programme expanded, and currently 12 PhD students are working in the Research Institute at any one time. Thirty students have obtained PhD and MD degrees from the Institute, which contributes to its scientific output.

Initially, the Research Institute took on seven students. Three of these students were from the UK and were funded by the charity and four, from South America, were funded with fellowships from their own countries.

The initial programme was a huge success with several of the students winning prizes for their presentations at scientific and clinical meetings in both the UK and abroad. The students also made an invaluable contribution to the research work of the Anthony Nolan Research Institute. Their intellectual and practical input helped the institute advance towards its own goals more rapidly.

More than 20 years on, Professor Madrigal still oversees the PhD programme which continues to generate world-class scientists. These scientists take the knowledge learned from their time in the Anthony Nolan Research Institute and, going on to become leaders in their field, use it to help people with blood cancer around the world.

A major advantage of attracting students from

Given the benefits to both the students and the charity, the

towards their doctorates. Each student was supervised by a permanent senior scientist within the Research Institute and the senior scientist would use their own knowledge to help ensure students were working to the highest standards. At the same time, the students often brought a fresh and creative approach to tackling scientific problems, which could provide new ideas for the senior scientists’ own projects.

‘WORKING AT THE ANTHONY NOLAN RESEARCH INSTITUTE WAS ONE OF THE MOST REWARDING PROFESSIONAL EXPERIENCES OF MY LIFE AND INSPIRED ME TO CREATE A SIMILAR INSTITUTION IN TORREON, MEXICO.’ DR RAFAEL ARGUELLO, PHD STUDENT 1993 73

cells, then we first need to make neural progenitor cells from stem cells. Umbilical cord blood has lots of types of stem cells in it, some of which researchers have only discovered recently. Anthony Nolan has used the haematopoietic, or blood, stem cells present in cord blood for years now as these can be used to treat blood cancer. My research looked at all the different types of stem cell in cord blood and then seeing which ones are able to make the best neural progenitors.

DR CESAR ALVAREZ PhD student and neurologist Cesar Alvarez undertook the first research project conducted by Anthony Nolan that is outside the field of blood cancer. He investigated the uses of cord blood in regenerative medicine, research which has huge implications for the future of Anthony Nolan and could have an international impact on medicine.

‘Stem cells have the ability to become other types of cell in the body. On their way to becoming those cells they go through the stage of being a progenitor cell. Progenitor cells are like a stem cell but have a specific ‘target’ type of cell that they will become, whether it’s blood, skin, bone, whatever. So, for example, if we want to make neurons, or brain

If we can make neural progenitors then we’re on the way to making neural cells which could be used to treat Alzheimer’s, Parkinson’s, multiple sclerosis, strokes and other neurological conditions. Using cord blood cells to effectively treat such conditions is still a long way off, but the potential is definitely there. At the moment, most of these conditions have no treatment at all, so even if we can influence the conditions rather than fully treat them that would be a huge step forward.’

‘WHEREVER I WORK, I NEVER FORGET THE FANTASTIC START I RECEIVED IN MY SCIENTIFIC CAREER BY TRAINING AT ANTHONY NOLAN.’ DR ISABEL PEREZ-CRUZ

DR ISABEL PEREZ-CRUZ

PhD student Isabel Perez-Cruz (left) with her supervisor Dr Shara Cohen in the 1990s

‘When I arrived at Anthony Nolan in 1995, I was 25 years old and had never been outside my home country of Mexico before. I was very excited, full of energy and ready to undertake a great research project.

at the Anthony Nolan Research Institute allowed me to design and carry out a very successful project that culminated in recommended modifications of the diet of cancer patients receiving chemotherapy.

Although my English was not very good, I was immediately assigned to a Scotsman, Mr Alasdair McWhinnie, who was going to train me in Molecular Biology! He reassured me that even English people found it a challenge to understand him and he was always very patient and clear with me in all his explanations.

At the Anthony Nolan Research Institute, I not only received a solid training in immunology and cancer biology, but was also trained in analysis, presenting and investigating different paths of a project. Most of all, I was trained how to work hard. It was very clear to all of the PhD students that we were there to complete a distinguished project and not only to ‘get a degree’.

My final project, under the supervision of Dr Shara Cohen, was to analyse the cytokines produced during a bone marrow transplant. Our research confirmed the theory that some mismatches between donors and patients are permissible. After gaining my PhD while at Anthony Nolan, my first Postdoctoral Fellowship was at Memorial Sloan Kettering Cancer Center (MSKCC), in New York City. My training

Anthony Nolan Graduates have gone on to occupy positions in academia and industry with great success. We owe this to Professor Alejandro Madrigal, who always knew we could deliver high quality research and encouraged us to do so. Wherever I work, I never forget the fantastic start I received in my scientific career by training at Anthony Nolan.’ 75

FLOWER POWER: 20 YEARS OF THE DAISY BALL The Daisy Ball is one of Anthony Nolan’s longest-running and most successful fundraising events and it has become a key date in the charity’s annual calendar.

Anthony Nolan spent most of his life in medical isolation. His immune system, severely weakened as a result of his blood disorder, meant that his mother, Shirley, had to protect him from the risk of picking up infections from other people. However, despite the solitude he faced, Anthony was able to gain much enjoyment from the time spent in the fields around the small home Shirley rented in Thanet, Kent. Shirley wrote about his love of flowers while spending time in this open space: ‘His favourite flower was the simple daisy. Did he realise, I wonder, how swiftly the daisy blooms and dies? To me it is a sad analogy of his own short life.’ It was for this reason that the daisy was chosen as the emblem for the charity when it was first created.

Chairman Simon Dyson speaking at the Daisy Ball 2011

On Saturday 29 April, 1995, a special fundraising event was held to mark the 21st birthday of the charity. It was called the Daisy Ball, in memory of Anthony and his love of the flower. The concept for the event came

from Paul Stone and Lionel Cashin. Lionel is an Anthony Nolan Trustee and became involved in the charity after his 18-year-old brother died of leukaemia. The Ball, which is always held at the Grosvenor House Hotel in London, has received support from many artists over the years. Performers have included Cirque de Soleil, Heather Small from the band M People, the classical singer Russell Watson and The Osmonds. Many of the charity’s celebrity supporters also attend the Daisy Ball, often providing memorabilia for the auction. The event can raise in excess of £150,000 on the night, and in 2007 the Ball raised over £250,000. The Daisy Ball has become one of the charity’s key fundraising events and has brought in total funds of more than three million pounds. It is quite astounding how much money has been raised as a result of one child’s love of a simple flower.

‘HIS FAVOURITE FLOWER WAS THE SIMPLE DAISY. DID HE REALISE, I WONDER, HOW SWIFTLY THE DAISY BLOOMS AND DIES? TO ME IT IS A SAD ANALOGY OF HIS OWN SHORT LIFE.’ SHIRLEY NOLAN

LINDA ROBSON

Photo: Shoot-UK.com

‘When Birds of a Feather started, lots of charities wrote to me and Pauline asking if we could lend our support. While you’d love to be able to help everyone, there just isn’t the time. But when I got a letter from Anthony Nolan asking if we could offer a bit of help, I instantly remembered Shirley Nolan being on TV back in the 1970s.

Linda Robson joined the Anthony Nolan Register with her Birds of a Feather co-star and life-long friend Pauline Quirke in 1991. She has been a supporter of the charity for more than 20 years.

Back then, you just didn’t get people doing TV appeals and working with the media in the way Shirley did. She was ahead of her time really. She wasn’t going to just sit back and accept that nothing could be done for her little boy. And I could still remember Anthony’s lovely chubby face and thick dark hair and being so moved by his story. So, me and Pauline went along to the labs at Hampstead to join the register. We had our blood sample taken in front of a bunch of Fleet Street photographers. There was a bit of larking about and playing up for the cameras but we got a very serious message across – that more people needed to join the register so more lives could be saved.

A few years later, I got a letter through the door saying I’d come up as a potential match and I thought ‘Oh my God, I could save someone’s life!’ I had to have further tests and, although someone else turned out to be a better match, that’s when I found out a lot more about the science – all the work that goes into finding the best possible match and why your ethnic background affects who you’ll be a match for. It’s so important for people from all backgrounds to sign up. It’s amazing to see how much the science has progressed over the last 40 years. I’ve recently been supporting a young lad called Deryn Blackwell, who’s been seriously ill with two forms of cancer at the same time. He had a stem cell transplant from a German donor found through the Anthony Nolan register. I was expecting the transplant to take hours and involve a major operation. I was shocked when Deryn put a picture of himself on Twitter. He was sitting on the hospital bed having a transfusion! I can’t believe how much things have changed.

‘OUT OF THIS ONE LITTLE BOY, ANTHONY, SO MANY LIVES HAVE BEEN SAVED AND SO MUCH HOPE HAS BEEN GIVEN TO SO MANY PEOPLE OVER THE LAST 40 YEARS.’ LINDA ROBSON

Linda playing up to the cameras as she joins the Register with her co-star Pauline Quirke in 1991

I think children often deal with cancer in a way that adults can’t. They always seem to keep smiling and take it in their stride. I think it’s harder for the parents a lot of the time. You can see it in their faces. That’s why the work Shirley did in Anthony’s name has left such an important legacy. Out of this one little boy, so many lives have been saved and so much hope has been given to so many people – like Deryn and his family over the last 40 years.’

Linda shares a joke with Deryn and his mum Callie 79

A MARATHON EFFORT

The London Marathon, one of the worldâ&#x20AC;&#x2122;s largest sporting events, has provided Anthony Nolan with an incredible opportunity to raise awareness and funds. The London Marathon was first run on 29 March 1981 and since that time has become one of the biggest events in the global sporting calendar. It has also become much 80

more than a race; it has become a major fundraising event too. Anthony Nolan has benefited from the generosity and determination of runners, who have consistently raised significant amounts of money to support the charityâ&#x20AC;&#x2122;s lifesaving work. Anthony Nolan first became formally involved in the London Marathon in 1993, when the Gold Bond charity scheme was set up. The

Gold Bond scheme gives charities a guaranteed number of running places, which can then be passed on to runners who want to raise money through their marathon efforts. The scheme enables Anthony Nolan to create a team of runners who raise sponsorship ahead of completing the marathon. They all wear the charityâ&#x20AC;&#x2122;s running vest, which helps provide Anthony Nolan with

high visibility and awareness throughout the event. In 2006, Anthony Nolan was chosen as the London Marathon’s official charity, which provided the charity with an even higher profile and raised more than £1m. Since then, Anthony Nolan has been supported, each year, by hundreds of people who run on behalf of the charity and raise funds at the same time. Many of them have a strong personal connection to Anthony Nolan. For example, Melissa Fehr had a bone marrow transplant in 2009, from a donor found by Anthony Nolan and said she entered the 2014 London Marathon to ‘get my story out and show how Anthony Nolan saved my life, making me stronger and fitter than I ever was before’.

‘MY SON, JACKSON, WAS DIAGNOSED WITH LEUKAEMIA IN 2008. ANTHONY NOLAN SOURCED A MATCHING CORD BLOOD UNIT WHICH ENABLED JACKSON TO HAVE A TRANSPLANT. IT SAVED HIS LIFE. ANTHONY NOLAN IS A TRULY INSPIRING ORGANISATION AND I AM VERY PROUD TO BE ABLE TO REPRESENT THEM.’ ROB FRANCE 81

‘I JOINED THE ANTHONY NOLAN REGISTER MANY YEARS AGO, WHEN IT WAS FIRST GETTING UNDERWAY. I’VE ENCOURAGED MY CHILDREN AND MY STAFF TO SIGN UP TOO. IF YOU CAN SAVE SOMEONE’S LIFE, IT’S A WONDERFUL BLESSING FOR YOU AND THE PERSON YOU DONATE TO.’ SIR RICHARD BRANSON Anthony Nolan’s runners have consistently raised between £450,000 and £600,000 each year which supports its lifesaving work. The money is used to recruit more potential donors to the register, to search for donors when a patient needs a blood stem cell transplant, and to carry out further research to make transplants even more successful. Anthony Nolan was lucky enough to be chosen again as the official charity of the Virgin Money London Marathon in 2014 during its 40th anniversary year. As well as raising extra awareness about blood cancer, the urgent need for more donors and the vital work carried out by Anthony Nolan, the fundraising target of £1.1m will allow the charity

to add 10,000 more people to the register. For someone with blood cancer, this means 10,000 more chances of a potential cure. Sir Richard Branson, founder and chairman of the Virgin Group, said: ‘I joined the Anthony Nolan register many years ago, when it was first getting underway. I’ve encouraged my children and my staff to sign up too.

If you can save someone’s life, it’s a wonderful blessing for you and the person you donate to. I’m delighted that, 40 years after the register was created, Anthony Nolan is the official charity of the Virgin Money London Marathon. I’m a great believer in going after goals. Running a marathon and raising money for such a worthy cause is a goal to be proud of.’

‘I RAN MY FIRST MARATHON IN 1994 NOT LONG AFTER MY DAD WAS DIAGNOSED WITH LEUKAEMIA AND I RAISED FUNDS FOR ANTHONY NOLAN. WHEN I DISCOVERED THAT ANTHONY NOLAN WOULD BE THE OFFICIAL CHARITY FOR THE 20TH ANNIVERSARY OF MY FIRST MARATHON, IT FELT RIGHT TO RUN FOR THE TEAM AGAIN.’ LYNNE SPENCE 82

JORDAN’S MARATHON STORY Dad was sent to Cheltenham Hospital where he received three sessions of chemotherapy over a period of six months. After the chemo, we were told that, while dad’s leukaemia had gone into remission, it was very likely to return. Dad was then offered the chance of a bone marrow transplant and was told that, if it was successful, it

would considerably reduce the chance of the leukaemia coming back. Anthony Nolan searched the whole world for a donor but, sadly, noone was found as a suitable match for dad. My brother Dane and I joined the Anthony Nolan register because Dad’s situation made us realise the importance of having more people signing up.

Photo: Andy Cunningham, The Shropshire Star

‘In June 2009, my dad, Roger, was diagnosed with leukaemia and told that he had less than one year to live. I was only 18 years old and the news shook me to pieces. I just could not comprehend how my dad, a hard-working man who was so close to retirement, could get this. It was devastating.

Olympic swimmer Sharron Davies hands the Olympic torch to Jordan Baxter 83

‘WHILE A MATCH WAS NEVER FOUND FOR DAD, WE GET COMFORT KNOWING THAT WE WERE ABLE TO SAVE THE LIFE OF SOMEONE ELSE.’ JORDAN BAXTER

Dane came up as a match for a woman in need of a blood stem cell transplant and donated his blood stem cells. Sadly, despite the transplant going ahead, we were told the woman died six months after the procedure. But it’s nice to know that she was able to have extra precious time with her family thanks to Dane’s help. In 2011, I decided to run in the London Marathon for Anthony Nolan because I wanted to raise awareness of the desperate need for more people to join the register and increase the chances of a match being found for people like my dad. On a personal level, I ran the marathon for my dad, to show him how much he means to me. I set a fundraising target of £2,000 but smashed that and raised a total of £10,595. Dane was so proud of what I’d done, he nominated me to run with the Olympic Torch. I was chosen as a Torchbearer and, on 24 May 2012, I ran with the flame through my home town of Leominster. Dad was there to see me help the flame on its way to the Olympic 84

Stadium in London. He was so proud of me and it was a very emotional day. Dad died three months later. He was 63. While it was not the happy ending we were desperately hoping for, many good things came out of the whole experience. Jordan with his dad Roger

So, while a match was never found for dad, we get comfort knowing that we were able to save the life of someone else, thanks to the work of Anthony Nolan.’

ANONYMOUS CONTACT

The correspondence between Chris Corbin, one of London’s leading restaurateurs, and Stewart North, a businessman from Leicestershire, began on the day Stewart donated his bone marrow. It led to a lasting friendship.

CHRIS CORBIN ‘I was diagnosed with chronic myeloid leukaemia in the summer of 1990. I was 38 years old. Obviously, there’s never a good time to be told you have cancer but I’m not sure I could have received my diagnosis at a worse time. My wife, Francine, and

I had two young twins and I had just opened The Ivy with my business partner, Jeremy King. The leukaemia had been picked up through a fairly routine blood test and I didn’t have symptoms, so I agreed with Francine and Jeremy that we would not tell anyone else. I didn’t want to be walking around the restaurant with everyone knowing I was the man with leukaemia. I was looked after by Professor John Goldman at Hammersmith Hospital. Even though I was feeling well at that point, he told me very early on that, ultimately, a bone marrow transplant would be required. I have two sisters and they underwent tissue typing to see if they were suitable; they turned out to be a match for each other, but not for me. So, Anthony Nolan began searching for a donor. Four years later, John told me that they had found a partial match. While it wasn’t perfect, his opinion was that I should ‘grasp the nettle’. I was almost 42 and, at that time, John said he did not like to perform unrelated

Photo: James Strachen

To protect the confidentiality and wellbeing of patients and their donors, Anthony Nolan operates a strict anonymity policy before a transplant takes place. In the two years following a transplant, donors and recipients may, if they wish, write to one other as long as no identifiable details are included. After the two year period has passed, a donor and recipient can meet in person.

Chris Corbin during treatment

bone marrow transplants once people reached 45. My transplant took place on 1 June 1994 and, shortly before, I had to undergo conditioning. My own immune system was wiped out by chemotherapy and radiotherapy to prepare my body for the donor’s stem cells. My donor wrote a short note to me the night before he donated his bone marrow. He said he’d had a pint of Guinness and that he hoped it would do me some good. It put a smile on my 85

face during a very difficult time and it marked the start of a long period of correspondence.

young children around the same age and we like dogs. We even had very similar handwriting.

It’s quite strange to write to a stranger and to know that every piece of correspondence is being checked before it’s sent on, to make sure you’re not giving any clues away about your identity. It felt like being in a prisoner of war camp.

As I approached the end of the two-year anonymity period, I told Anthony Nolan that I would like to meet my donor. They checked and said he was happy to meet too, so we arranged to have our introduction at the charity’s offices in London.

Despite knowing little about one another, it was amazing how quickly we formed a bond through the letters we exchanged. I realised that we had quite a lot in common: we both had our own business, we had

When Stewart and his wife, Barbara, came into the meeting, Stewart simply said ‘So, this is Chris, is it?’ and the conversation flowed naturally from that moment. Since that time, Stewart and I have become firm friends and our families have also

become close. Stewart asked me to be godfather to his son and Francine is godmother to his daughter. We have taken holidays together and Stewart has become great friends with Francine’s brother, Jean Paul. Stewart is a dog trainer and we have two dogs which he found for us. I am blessed to have had Stewart as my donor and I am so glad that we exchanged the letters which led to our friendship. It is impossible to fully convey what Stewart’s decision to donate his bone marrow means to me but our intertwined lives are a wonderful example of the power of Anthony Nolan’s work’.

STEWART NORTH ‘I was a member of the Round Table in Leicestershire and had helped to organise a donor recruitment session for Anthony Nolan. About 250 people signed up and, at the end of the evening, all the organisers felt we ought to give a blood sample too.

saying that I was a potential match and I was invited to London for further tests. I expected things would progress very quickly from that point but it was another couple of years until I heard anything else. I’d actually forgotten about it by that stage.

Two years later, I received a letter from Anthony Nolan

I travelled to the Royal Free Hospital in London

for the procedure to extract my bone marrow. I had to undergo a general anaesthetic, which my wife Barbara was very concerned about. I was quite relaxed about it all though. The evening before the procedure, I went to see the musical Cats and had a pint of Guinness. I decided to write a card to my recipient

‘MY DONOR WROTE TO ME THE NIGHT BEFORE HE DONATED HIS BONE MARROW. HE SAID HE’D HAD A PINT OF GUINNESS AND THAT HE HOPED IT WOULD DO ME SOME GOOD. IT PUT A SMILE ON MY FACE DURING A VERY DIFFICULT TIME.’ CHRIS CORBIN

After that, we wrote to one another fairly regularly. At first, it was short notes on postcards. I remember getting a card with a picture of Stonehenge on the front and there seemed to be a lot of cards from resorts which had better climates than Britain. A number of the cards looked to have an outdoor sporting theme and I did wonder whether he was a sportsman. There was never any mention of restaurants, so I would never have guessed Chris was such a high-profile restaurateur. When we finally met, we got along really well from the start but it was really hard to get past the initial ‘thank you’ stage. We used to meet up for dinner in London and trying to pay the bill was a nightmare. Chris always insisted on sorting it out. In the end, I had to arrange a curry night in Leicester where no-one had heard of Chris, just so I could pick up the tab! Of course, donating your bone marrow to someone

Photo: www.lynnhilton.com

mentioning that I hoped the drink would do them some good. It’s hard to know what else to say to someone whose life is on the line.

does not mean you’re necessarily going to get on. You could be chalk and cheese. There has to be more of a connection than having a matching tissue type. I donated my bone marrow because I knew it was the right thing to do. I didn’t do it with any expectation of ever meeting my recipient or expecting to meet them in person. But, I’m so glad that the process of writing the letters allowed us to go on to develop such a good friendship. It really helps me appreciate the impact Chris’ successful transplant has had, not only for him but for his immediate and extended family.’

Chris Corbin (left) with his donor Stewart North

The letter Stewart wrote to Chris just before the transplant 87

THE PAST 40 YEARS 1970s 1971 Anthony Nolan is born with Wiskott-Aldrich syndrome 1973 1st successful bone marrow transplant from an unrelated donor 1974 Shirley Nolan sets up the Anthony Nolan register from Westminster Hospital 1978 Move to the charity’s first official laboratory at St Mary Abbots Hospital, run by Dr David James 1979 Anthony Nolan dies before a match can be found

1980s 1986 At the start of the year, the register stands at 74,000 people 1986 The Round Table signs up 100,000 donors in 6 weeks 1987 Des Brady becomes the charity’s first Chief Administrator 1987 Simon Dyson is appointed as Chairman, a post he still holds today 1988 Dr John Goldman, a leading bone marrow transplant specialist is appointed as Medical Director 1988 The charity becomes a founding member of Bone Marrow Donors Worldwide 1988 The Round Table raises over £1m for the charity to fund new labs 1989 Move to portacabins at the Royal Free Hospital in Hampstead

1990s 1990 Anthony Morland MBE is appointed as Chief Executive 1991 The Duchess of Kent becomes Patron and officially opens the new labs 1993 Head office moves to Heathgate, close to the Royal Free 1993 Building starts of new Research Institute, overseen by Research and Scientific Director, Professor Alejandro Madrigal 1994 1,000th patient provided with a transplant and the register grows to 250,000 1996 The Duchess of Kent officially opens the new research facility 1997 2,000th donor is matched 1998 300 donors are provided for the first time in a single year 1999 The Register grows to 300,000

2000s 2000 Shirley Nolan is awarded an OBE 2000 Introduction of peripheral blood stem cell collection as an alternative method of donation 2000 100 overseas bone marrow matches are identified for UK patients 2000 Annual income exceeds £10m for the first time 2002 Shirley Nolan dies. Her legacy continues as the register grows to 320,000 2003 Chairman, Simon Dyson is awarded an MBE 2003 Research and Scientific Director Alejandro Madrigal is chosen to lead Allostem, a major EU-funded cancer research project, involving 29 research partners from 13 different countries

2010s 2003 Dr Steve McEwan is appointed as Chief Executive 2004 The 4,000th donor is provided for someone in need of a transplant 2006 Charity of the Year for the Flora London Marathon and easyJet 2007 The 5,000th donor is provided for someone in need of a transplant 2008 Cord blood collection programme commences, including the UK’s first dedicated cord blood bank and research facility

2008 Deputy Director of Research, Professor Steven Marsh, is appointed President of the European Federation for Immunogenetics, strengthening the charity’s scientific profile 2008 Chief Executive, Dr Steve McEwan, tragically dies as a result of a motorcycling accident 2008 Register & Be a Lifesaver, the pioneering scheme that helps young people discover how they can save lives through stem cell, blood and organ donation, is launched 2009 Henny Braund is appointed as Chief Executive

2010 Complete rebrand and change of name to Anthony Nolan 2010 The historic switch from blood tests to saliva kits, used in donor recruitment 2010 Two further cord blood collection centres are opened in Leicester 2010 The charity’s largest annual corporate partnership with Wilkinson, valued at £1.6m 2010 Research and Scientific Director Alejandro Madrigal is appointed President of the European Group for Blood and Marrow Transplantation (EBMT) 2010 Professor John Goldman retires as Medical Director and joins the Board of Trustees

2010 Professor Charles Craddock, a leading stem cell expert, is appointed as Medical Director 2010 The 6,000th donor is provided for someone in need of a transplant 2011 A single UKwide registry commences, managed by Anthony Nolan 2012 The register grows to 460,000 2012 The charity becomes the first register in the world to start recruiting 16 year olds 2012 For the first time ever the charity facilitates over 1,000 transplants in a year 2013 The register hits the half a million mark 2014 The charity celebrates its 40th anniversary 2014 Charity of the Year for the Virgin Money London Marathon

THE LAUNCH OF STUDENT GROUP, MARROW ‘In late 1997, during my third year of medical training at Nottingham University, I was at a dinner party with some fellow students when I received a phone call from my mother. She told me that a school friend of mine, Karen Morris, had been diagnosed with leukaemia.

James Kustow, founder of Marrow

In 1998, James Kustow was inspired to organise a donor recruitment clinic at Nottingham University, where he was a medical student, after his friend was diagnosed with leukaemia. Following the success of that single event, James went on to found Marrow, an awardwinning medical studentrun organisation that recruits students to the Anthony Nolan register.

Karen and I had been close when we were younger. We had sat next to each other at primary school and went to Jewish youth club together too. Although we’d not seen each other much over the preceding few years, I was very fond of her and completely thrown by the news. It was the first time I’d had someone of my age face something so serious in their life. It had a big impact on me. My mother told me that Karen needed to have a bone marrow transplant if she was going to survive and that Anthony Nolan was looking for a match for her. I didn’t really know anything about bone marrow transplantation but I decided that I was going to run a one-off recruitment event. I really wanted to do something tangible to help

Karen. Calling her just didn’t seem enough. I contacted Anthony Nolan and asked what I needed to do to run a clinic. It was fascinating to learn more about the process - I hadn’t realised just how difficult it can be to find a match for someone, especially someone from an ethnic minority group. It reinforced my decision to try and get a few more people onto the register. I went ahead and organised a recruitment clinic for my medical student colleagues with the help of some close medic friends. We put posters up around the medical school and took blood samples on the day. It was a huge success and there was so much enthusiasm on both sides; the team running the clinic were as excited as those signing up. It got me thinking about who the ideal bone marrow donor would be. Given the fact that people can sometimes stay on the register for years before they come up as a match, I concluded that the best recruits would be young, in

good health, informed and motivated. I also realised that running the clinics required people with good interpersonal skills and, at that time, the ability to take a blood sample. Medical students fitted the bill as ideal recruiters, and students in general as potential donors. I felt there was real potential to set up something more permanent but I knew I had to put a system in place that could continue after Iâ&#x20AC;&#x2122;d graduated. If it relied too much on me, I knew there

was a risk it wouldnâ&#x20AC;&#x2122;t keep going once I left. I invested a lot of energy putting together a high quality team of medical students who were really motivated to get the system off the ground. Critically, I made sure there were students represented from every year group, so that there would be a natural flow of people in and out of the committee. We decided to call the group Marrow. In 1998, we ran a number of training events and built

a team of over a hundred medical students who became our workforce. We started running fortnightly recruitment clinics at various sites around the Nottingham Campus - halls of residence, the medical school and student societies. The ball was officially rolling and it was picking up huge momentum. Tragically, later that year, Karen died. A match had been found for her and the bone marrow transplant had gone ahead but the leukaemia had advanced

An early Marrow leaflet

Press coverage of Marrow

the Marrow volunteers, the network has gone from strength to strength. Marrow now exists in 40 universities across the UK and the idea has also been adopted by seven other countries, who, under the Marrow banner, recruit for their own local registers.

Marrow students in Leeds joining the register

too quickly. Karen suffered a relapse six weeks after the transplant and passed away four months later. In 1999, we identified medical students from other universities, who were interested in what we were doing in Nottingham, and assisted them in establishing their own local Marrow groups. We put together a comprehensive guidance pack, based on the experience we’d gleaned over the previous year running clinics and

fundraising events in Nottingham. Then we sent teams to other universities to run training events. Essentially we created a Marrow franchise. By the end of 2000, Marrow groups were up and running in Bristol, Cambridge, Edinburgh, Leeds, Leicester, Liverpool, London, Manchester, Newcastle, Oxford, Sheffield and Southampton. Since that time, thanks to the tremendous energy and commitment of all

Marrow’s work has been recognised by the World Health Organisation’s ‘International Federation for Medical Students Association’ (IFMSA) and Marrow has won the ‘Best Medical Student Project in the World’ on two separate occasions. Since its foundation, Marrow has recruited more than 60,000 people to the Anthony Nolan register and more than 550 of those have gone on to donate their bone marrow, which is an extremely high match rate compared to other ways of recruiting people to the register. I now work as a Londonbased Consultant Psychiatrist but I still follow the progress that Marrow and Anthony Nolan are making together. I feel immensely proud of

‘THANKS TO THE TREMENDOUS ENERGY AND COMMITMENT OF ALL THE MARROW VOLUNTEERS, THE NETWORK HAS GONE FROM STRENGTH TO STRENGTH.’ JAMES KUSTOW, FOUNDER OF MARROW

everything that Marrow has achieved. I know that Karen’s mother, Sylvia, who set up the Karen Morris Memorial Trust to provide support and facilities for leukaemia patients and their families, also takes great comfort from the fact that the work being done by Marrow, in Karen’s memory, has given the chance of life to so many other people. I thank the Anthony Nolan team who I worked closely with in those early days for believing in us and supporting us to create something truly special that has stood the test of time.’

Marrow students at a recruitment event

‘I FEEL LIKE I CAN MAKE A MASSIVE DIFFERENCE THROUGH MARROW AND WE’VE DONE LOTS OF CRAZY THINGS TO RAISE FUNDS AND AWARENESS – INCLUDING A NAKED CALENDAR! THE ICING ON THE CAKE WAS BEING CALLED UP TO DONATE. I’VE RECENTLY FOUND OUT THAT MY RECIPIENT IS DOING WELL, WHICH IS AN INCREDIBLE FEELING.’ MARROW DONOR CALUM MCDONALD WOOD

A MARROW RECRUIT In 2003, she launched Millie’s Campaign to raise awareness about the need for more donors on the Anthony Nolan register. I followed her story in the news and was struck by how difficult it proved to find a suitable donor for her.

Scott Shepherd joined the Anthony Nolan register in 2003 when he was a medical student at Glasgow University. Scott signed up at an event run by student group Glasgow Marrow. ‘I was inspired to sign up after hearing about a young woman called Millie Forbes from Keig in Aberdeenshire. She’d been about to start University when, in August 2002, she was diagnosed with acute myeloid leukaemia.

At that time, I was studying medicine at Glasgow University and the local Marrow group ran a recruitment event to encourage students to join the Anthony Nolan register. I didn’t need any encouragement. I thought about Millie and signed up straight away. Knowing how hard it can be to find a match for many patients, I never really expected to hear anything else about it. So, it was a bit of shock when, eight years later, Anthony Nolan contacted me to say I’d come up as a match for someone. I donated in April 2013 by Peripheral Blood Stem Cell

collection, a procedure similar to giving blood. The donation was very simple and it wasn’t painful at all. I managed to watch a film and read a book; it was actually quite a pleasant experience. After the donation, I was a little tired but I was back in work two days later. I feel that I am linked to a stranger by the simple fact that we have a similar tissue type and that I was on the Anthony Nolan register at the right time. That person had spent the previous year in and out of hospital, hoping that they were well enough for a transplant. I spent a couple of days out of my life to try to save theirs. It’s great that Marrow do so much work at universities across the UK to recruit students to the Anthony Nolan register. Without their efforts, I may not have signed up to the register and my recipient may not have been given a chance of life.’

‘IT’S SO REWARDING TO SEE HOW, WHEN YOU PUT YOUR MIND TO SOMETHING, YOU CAN REALLY MAKE A DIFFERENCE.’ DAMI AREWA

A MARROW FUNDRAISER As well as recruiting students to the Anthony Nolan register, Marrow volunteers also raise money to support the charity’s work. 20-year-old Dami Arewa became the fundraising coordinator for the Lancaster University Marrow group while studying for her degree. ‘I was starting the second year of my biochemistry degree at Lancaster and was walking round the Freshers’ Fair when I was approached by another student, Katie Mitchell. She asked me if I’d ever heard of Anthony Nolan. I hadn’t so Katie explained that she was President of Marrow and told me all about the work the student group does to support Anthony Nolan’s lifesaving work. I thought it sounded like a great cause so I said I’d get involved.

I organise a wide range of events, including bake sales and University Challenge style quizzes. We have created a formal partnership between Marrow and the Students Union and, this year, we’ll be carrying out a massive fundraising campaign, which I’m really excited about.

Being a Marrow volunteer has helped me develop a widerange of skills and, seeing the incredible work that Anthony Nolan does to save lives, I’ve decided to study medicine once I’ve finished my biochemistry degree. I want to continue making a difference to people’s lives once I graduate.’

We’ve all worked really hard over the last year to grow the presence of Marrow on campus and it’s really paid off. It’s so rewarding to see how, when you put your mind to something, you can really make a difference.

I offered to help with fundraising as I’d never been involved in fundraising in a professional way. I thought it would be a great experience. 95

FROM PATIENT TO CAMPAIGNER Katy Burnett had a bone marrow transplant when she was six years old. After overcoming years of health problems, Katy is now studying at Kent University, where she set up a branch of Marrow; a group which encourages students to join the Anthony Nolan register.

Katy being treated in hospital

‘When I was five, I was on a family holiday with my Mum, Dad and sister. My parents noticed I had a bloated stomach and wasn’t standing up properly. They thought I had probably picked up a stomach bug. When we got home my Mum took me to the doctor, who was concerned and sent me for some tests. On 5 June 1998, I was diagnosed with a very aggressive strain of chronic myeloid leukaemia – a type of blood cancer which is normally found in adults. Even though I was still only five years old at this point, I remember everything very clearly. The doctors told us that we needed to find a 96

bone marrow donor within a year to save my life. Because of the urgency of my situation, my parents immediately started working with Anthony Nolan on a donor recruitment drive. I was incredibly lucky as Anthony Nolan found a matching donor for me very quickly. My donor from Holland was the only person Anthony Nolan found who matched my tissue type. It really is quite overwhelming to think that, if she hadn’t signed up to the register in her country and been willing to donate her bone marrow to a complete stranger, I might not be here today.

‘IT REALLY IS QUITE OVERWHELMING TO THINK THAT, IF SHE HADN’T SIGNED UP TO THE REGISTER IN HER COUNTRY AND BEEN WILLING TO DONATE HER BONE MARROW TO A COMPLETE STRANGER, I MIGHT NOT BE HERE TODAY.’ KATY BURNETT

On 30 April 1999, I had a successful bone marrow transplant. I was six years old. While the transplant was successful, my leukaemia relapsed and I had to have chemotherapy and radiotherapy to treat it the second time. I didn’t really have much of a childhood and could never do things that normal children my age were doing.

Having learnt about Marrow, which promotes Anthony Nolan’s vital work to undergraduates and encourages them to join the register, I decided to set up a branch at my university. Along with some friends, I ran the first recruitment event in March 2013. The response was incredible with more than 100 people

signing up - far more than we were expecting. Volunteering for Anthony Nolan is one of the most rewarding experiences I have ever had. It opened my eyes to how much I could change things in the world and makes me feel like the impossible is possible!’

However, on 8 November 2011, the week of my 18th birthday and 13 years after I was initially diagnosed with leukaemia, I finally got the news I’d been hoping for – I had the all clear and I didn’t have leukaemia any more. My family and I were overwhelmed. It felt as though I was finally able to start putting my health problems behind me. I applied to study Forensic Science at Kent University and, once I was settled, I decided I wanted to give something back to Anthony Nolan.

Katy Burnett today

ANONYMOUS LETTERS BETWEEN PATIENTS AND DONORS

‘WHEN THE DOCTOR SHOWED ME THE PLASTIC BAG CONTAINING YOUR STEM CELLS JUST BEFORE THE TRANSFUSION, I HAD NOT SEEN ANYTHING SO BEAUTIFUL SINCE PATSY KENSIT FIRST APPEARED IN A NURSE’S UNIFORM IN HOLBY CITY.’ BONE MARROW RECIPIENT 98

‘WE HAVE INCLUDED A LITTLE GOLD HEART IN THIS ENVELOPE. YOU DON’T HAVE TO WEAR IT, WE JUST WANT YOU TO PUT IT SOMEWHERE YOU CAN SEE IT AND IF YOU EVER HAVE A BAD DAY, PLEASE SEE THE HEART AND KNOW THAT SOMEWHERE IN THIS WORLD ARE A GROUP OF PEOPLE WHO KNOW THAT YOU ARE A COMPLETE HERO.’ PARENTS OF A BONE MARROW RECIPIENT

SECTION FOUR

‘IT’S JUST INCREDIBLE TO THINK THAT STANLEY’S ONLY JUST BEEN BORN AND HE COULD ALREADY HELP TO SAVE SOMEONE’S LIFE.’ LAUREN ORCHARD, MOTHER OF STANLEY AND CORD DONOR

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SAVING LIVES ACROSS THE WORLD Since the Anthony Nolan register became the world’s first bone marrow register, many other countries have created their own registries, often with support from Anthony Nolan. Russia, Korea, India, China and many countries in South America are just some of the places the charity has helped. Today, registries around the globe collaborate to find the most suitable donor for each patient. These are just a few examples of the way Anthony Nolan works to break down international barriers in order to save lives.

NEW YORK TO BIRMINGHAM

Mark Worrall from Birmingham was diagnosed with leukaemia in 2003, at the age of 31. Doctors told him he needed a stem cell transplant to survive but, as he has a mixed race background, this made finding a match harder as ethnicity affects a person’s tissue type. Anthony Nolan searched its own register as well as registries worldwide. Audrey Pollard from New York came up as a match. Amazingly, Audrey had only joined the

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Mark and Audrey met for the first time on 8 March 2012. Mark flew to New York to support a donor recruitment event hosted by the US Postal Service where Audrey worked. Audrey said: ‘I never imagined I would feel the way I did when I met Mark face-to-face for the first time. As I was sitting in the chair during the ceremony, the impact of what I did for him finally hit me. I had saved his life. I was brought to tears just thinking that he might not be alive if it had not been for me being on the bone marrow registry.’

Mark said: ‘When I finally met Audrey, I was shocked just how deeply it moved me. The true impact of her decision to join the bone marrow registry hit me. It had not only affected my life, it had affected Audrey’s life, the lives of my family, my girlfriend’s life and her family too. So many lives had been touched and affected in such a profound way by Audrey’s decision to sign up.’

Photo: Curtis Jewell

United States registry six months before Mark was diagnosed. Audrey donated her blood stem cells and Mark’s transplant went ahead in 2004.

Mark meets his donor Audrey in New York

‘I FEEL VERY GOOD. I CAN NOW RUN AS FAST AS I USED TO BE ABLE TO. SUSAN IS LIKE AN ANGEL TO ME.’ LEON, STEM CELL RECIPIENT

MANCHESTER TO MALTA

Susan Ratcliffe from Manchester joined the Anthony Nolan register in 1977, just a few years after it had been created. She was about to go on holiday when she saw an appeal on the TV asking for potential donors. She decided to sign up before she flew out on holiday the following day. Susan didn’t think anything more about it until, 31 years later in October 2008, Anthony Nolan contacted Susan to tell her she was a potential match for a young boy in Malta. When further tests showed that Susan was a perfect match, she donated her blood stem cells so the young boy could have his transplant. In order to protect both the donor and patient from undue emotional pressure, the

Susan Ratcliffe meets her recipient, Leon, with her husband Tony, at the Presidential Palace in Malta

identity of both parties is kept anonymous for two years. However, correspondence which does not contain any identifying information can be sent through Anthony Nolan. Susan communicated with the family in this way for two years until, in September 2011, she flew to Malta to meet Leon, the boy whose life she had saved. A few months later, Leon and his family came to stay with Susan and her husband, Tony, in Manchester to celebrate the New Year. Leon is a

Manchester United fan and Susan arranged for the club’s manager, Sir Alex Ferguson, to donate four tickets to United’s home game on New Year’s Eve. Susan said: ‘Leon’s life is his own to live as he should be living it. It is just great. I would urge anybody who wants to do something good to join the Anthony Nolan register. Leon is living proof that it works.’ Leon said: ‘I feel very good. I can now run as fast as I used to be able to. Susan is like an angel to me.’ 103

LONDON TO AUSTRALIA Sadly, the young man suffered complications following the transplant and died a few months later.

In 2012, Anthony Nolan supplied its first ever international shipment from its cord blood bank in Nottingham. It was destined for a young Aboriginal man in Australia who had been diagnosed with acute myelogenous leukaemia in December 2011. The cord had been collected at King’s College Hospital London, one of the centres where Anthony Nolan runs a cord blood collection programme. The cord came from a mother who had Philippine ethnicity. The cord was dispatched from Nottingham on 7 March 2012 in a special cryoshipper and it arrived in Australia two days later. The patient received the transplant on 10 April 2012 and initially appeared to be responding well to the treatment. 104

It is still the case that not every transplant is a success and there can be many complex reasons for this. Sometimes, patients are already very weak from repeat recurrences of their blood cancer. The chemotherapy and radiotherapy treatments which are required both to treat the cancer and prepare the patient’s body for the transplant can also weaken the patient’s health. Sometimes, despite a donor and patient appearing to be a good match, the donated cells do not perform as expected. It is an area Anthony Nolan scientists are spending much time and energy exploring in the charity’s Research The stem cells packed and Institute. Great progress has ready for export to Australia already been made but there is much work to do to fully understand this complex area of science.

‘I WISH I COULD THANK THIS STRANGER IN JAPAN FOR SAVING MY DAUGHTER’S LIFE. THEY WILL NEVER KNOW HOW GRATEFUL WE ARE. THAT SIMPLE DONATION MEANS SORREL IS NOW LEADING A COMPLETELY NORMAL LIFE.’ SORREL’S FATHER, ROBERT

TOKYO TO SUFFOLK

Sorrel Mason was diagnosed with Acute Myeloid Leukaemia (AML) in September 2006, when she was only 21 months old. Sorrel had a rare strain of AML which did not respond to several rounds of chemotherapy and she spent more than a year in hospital.

Sorrell during treatment

Anthony Nolan searched its register for a match for Sorrel and, when no-one was found, began to search registries around the world. It was a fraught time for her parents Samantha and Robert, who were trying to remain positive for Sorrel and her younger sister, Daisy, while waiting for a glimmer of hope.

also helped the charity with promotional work, including making a video about cord blood donation. Sorrel’s father, Robert, said: ‘I wish I could thank this stranger in Japan for saving my daughter’s life. They will never know how grateful we are. That simple donation means Sorrel is now leading a completely normal life.’

Finally, after an agonising wait, Anthony Nolan found a partial match for Sorrel with stem cells taken from a mother’s umbilical cord in Tokyo. While adult bone marrow or blood stem cells require a perfect match, an advantage of cord blood is that partial tissue type matches can be used effectively. In February 2007, Sorrel underwent a transplant using the cord blood donated by a stranger on the other side of the world. The transplant was a success and, since regaining her health, Sorrel has enjoyed returning to school and spending time with her friends again. She has 105

MAKING DONATION SIMPLE

When the Anthony Nolan register was created in 1974, a bone marrow transplant was the only known way to successfully transfer blood stem cells from a donor to a patient. Today, bone marrow donation has largely been replaced by peripheral blood stem cell donation, which is a simpler and more convenient procedure. When Shirley Nolan created the Anthony Nolan register in January 1974, a bone marrow transplant was a revolutionary procedure. The first successful transplant involving a patient who was unrelated to their donor had only taken place a year earlier. Even by the early 1980s, unrelated bone marrow transplants were still relatively uncommon, primarily because there were insufficient numbers of potential donors on the register to find suitable matches for most patients. There were ethical issues to consider too. This is the case in all branches of medicine but especially so in an area where two totally unrelated individuals are involved in 106

a collaborative procedure designed specifically to benefit one but not the other. A general anaesthetic is required to remove bone marrow from a donor and it was highly unusual for a person to undergo such a procedure when they would receive no benefit to their own health. However, given the overwhelming benefits to the individual patient, who was likely to die without the transplant, the British Medical Association agreed that, as long as donors were sufficiently informed about the procedure and were free to withdraw from the process at any stage, it was ethical to carry out bone marrow harvesting. Unrelated bone marrow transplants became more commonplace from the late 1980s for a number of reasons. The Anthony Nolan register underwent a major expansion following the 1986 recruitment drive. The larger number of additional people on the register increased the likelihood of matching donors being found for patients. The foundation of Bone Marrow Donors Worldwide opened

up international donor exchange and there were also big medical improvements in the way patients could be cared for post-transplant. In the 1990s, new techniques started to be developed which had the potential to improve bone marrow transplantation. One was the use of stem cells collected from peripheral blood or PBSC as it became more commonly referred to. Stem cells are found in the bone marrow and are the ultimate ‘parent cells’ as they create all the blood cells in the body. Through research, it became clear that these parent cells could be ‘mobilised’ into the blood stream. This is done by giving the donor four or five injections of a natural bone marrow stimulating hormone. These extra cells can be collected from the donor’s blood in a process which automatically extracts blood, pumps it into a special machine which collects the blood stem cells and then returns the rest of the blood to the donor.

A donor shares a joke with the nurse during the PBSC donation process

PBSC offers many advantages over bone marrow extraction. The donor does not require a general anaesthetic, does not need to stay in hospital and the recovery period is shorter. By the start of the new millennium, PBSC quickly became established as a

viable method of donation. In 2000, 17 donors from the Anthony Nolan register donated using the PBSC method. In 2001, 77 donations were carried out in this way and, in 2002, 131 PBSC procedures were carried out.

stem cells from a donor for transplantation. Nine out of ten donors have their stem cells extracted in this way and the relative simplicity of the procedure has transformed the donation process.

Today, PBSC is the preferred method of collecting blood 107

‘WHAT I HAD DONE REALLY HIT ME WHEN I RECEIVED A LETTER FROM MY RECIPIENT SAYING THAT THEY WERE DOING REALLY WELL. WHEN I OPENED THE LETTER, I JUST BURST INTO TEARS, IT WAS REALLY EMOTIONAL.’ LAURA JANE OAKLEY

Laura Jane Oakley during the PBSC donation process 108

‘THEY TOLD ME I HAD A HIGHER CHANCE OF BEING CALLED UP BECAUSE I AM ASIAN AND THERE AREN’T ENOUGH DONORS FROM ETHNIC MINORITY BACKGROUNDS ON THE REGISTER.’ KAANTHAN JAWAHAR - PBSC DONOR

KAANTHAN’S DONATION STORY The whole process was very organised and everyone was friendly and supportive. I had some side effects from the injections pre-donation, which are given to stimulate the production of the blood stem cells. It was nothing major but I felt a bit under the weather for a few days.

Kaanthan with his wife’s family, including his father-in-law Frank, a bone marrow recipient

‘I joined the Anthony Nolan register in 2005, when I was in my first year of medical school at King’s College London. Someone stopped me one lunchtime and asked me if I wanted to join the bone marrow register. I joined up on the spot because it sounded like something everyone should do. At the time, they told me I had a higher chance of being called up because I am Asian and there aren’t enough donors from ethnic minority backgrounds on the register.

I didn’t hear anything for seven years, so was quite surprised to be contacted by Anthony Nolan in 2013 to say that I had come up as a match for someone. I didn’t hesitate for a second. I knew that it was something that I would go through with. When I had signed up back in 2005, I’d assumed I’d need to have a bone marrow extraction if I ever came up as a match. But, most people now donate via Peripheral Blood Stem Cell donation, which is a lot easier.

In June, I went ahead with the donation and it was absolutely fine. I sat in a bed for a few hours, had my blood filtered, and watched a few TV shows. I felt quite tired afterwards but was back to normal within a couple of days. I know that many people are put off joining the Anthony Nolan register because they think donating bone marrow is a horrible and scary procedure. I want everyone to know just how simple it is. When someone is in need of a blood stem cell transplant, it really is their last chance. Taking a couple of days out of your own life to give someone the chance of a future is an incredible thing to be able to do.’

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DAVID HAREWOOD

that time, there were only 550 black or mixed race people on the register. Together with Daniel’s father, Orin Lewis, Beverley had set up ACLT to raise awareness of the lack of potential donors within the black community. I was staggered at how few people were on the register and felt moved to raise awareness within the black community myself.

Actor David Harewood, MBE, heard about the Anthony Nolan register through ACLT, which works to raise awareness of the need for bone marrow and blood stem cell transplants among Black, Mixed Race and Ethnic Minority communities. ‘I became aware of the Anthony Nolan register in 2005 when I heard a speech by Beverley De-Gale, whose six-year-old son Daniel had leukaemia. Daniel’s only hope of survival was a blood stem cell transplant and the best chance of a match was finding a donor who was black or mixed race. But, at 110

About a year later, I was at the Notting Hill Carnival with my girlfriend and we saw ACLT were holding a clinic to get black people to join the Anthony Nolan register. My girlfriend asked me whether I was on it and I realised that, although I’d done lots of work to raise the profile of ACLT, I hadn’t actually signed up myself! So, I went straight into the tent to join. Beverley was there and she took the blood sample from my finger herself. Within a year, in early 2007, I received a letter from Anthony Nolan saying that I was a close match. I had to give some more blood samples and, two weeks later, they told me I was the closest match. I felt so privileged to have been chosen.

For five days, a nurse came to my house to give me injections to boost my stem cell production. I don’t really like needles and I had to have two injections a day but I just kept thinking about the person I would be helping, as well as their family. I saw myself as a ‘farm’ for this person, producing something which could save their life. I did my best to keep really healthy that week. I went to the hospital to donate my stem cells and was fitted up to something which looked like a dialysis machine. My blood was taken out of one arm, the stem cells were removed, and the blood was then returned to my other arm. Sometime after the transplant, Anthony Nolan got in touch to say the person that had received the donation was doing well and was recovering. That was great to hear. A couple of years later, I found out that my recipient had relapsed; the cancer had returned and they had passed away. I felt quite emotional that this person, who I’d never met and knew absolutely nothing about, was gone. But I was also

‘I WAS STAGGERED AT HOW FEW PEOPLE WERE ON THE REGISTER AND FELT MOVED TO RAISE AWARENESS WITHIN THE BLACK COMMUNITY MYSELF.’ DAVID HAREWOOD

David in the Anthony Nolan laboratories

happy that I had been able to help provide those extra, precious years of life. In December 2012, I filmed a video for ITV’s charity appeal, Text Santa which was benefitting Anthony Nolan. I met a young man called Martin Solomon who was fighting cancer for the second time. He needed a blood stem cell transplant but, as he is mixed race, his chances of finding a match are much slimmer as there is still a shortage of suitable people on the register. It’s

really like looking for a needle in a haystack. His mother and sisters were all very emotional and had been working so hard to raise awareness and find a match for Martin. It really moved me that this closeknit, loving family were facing such uncertainty due to a lack of suitable people on the register. I hope that all eligible black and mixed race people will consider joining the register. Life is the most precious

thing any of us have. Saving someone else’s life, or giving someone a few more precious years, is not only one of the most charitable things you can ever do – it’s also one of the most beautiful.’

David on film with Martin Solomon and his sister, for Text Santa 2012 111

BACKED BY BIG BUSINESS From the moment Shirley Nolan launched the appeal to set up the Anthony Nolan register in January 1974, the charity has received overwhelming financial support from the British public, allowing it to continue its lifesaving work. As well as individual donations, however, the charity has also been supported by some of the UK’s largest companies. When Shirley Nolan decided to set up the world’s first bone marrow register, she knew she had to raise at least £3,000 to fund the laboratory work required to carry out the essential tissue typing of potential donors. This was a substantial sum of money, given the average house price in the UK at that time was £9,928. The people of Thanet in Kent, where Shirley had set up home, rallied round and began to organise raffles, coffee mornings, jumble sales and sponsored events. Shirley also paid a visit to Pfizer, the pharmaceutical company based nearby in Sandwich. She explained her plans for 112

easyJet staff raising vital funds

the donor register and Pfizer donated £500. Not only was it the appeal’s first major donation, it was also the charity’s first corporate donor. Since that time, many of the UK’s biggest companies have used their corporate strength to support Anthony Nolan. While much of the help has been financial, companies have also used their well-known brands to help raise awareness for the charity and to recruit people to the register.

The charity’s major donor recruitment drive of 1986, organised by the Round Table, was supported by Woolworths. Given the prominence of Woolworths on the high street at that time, it provided a massive boost to public awareness of Anthony Nolan and its mission. In more recent years, Anthony Nolan has formed formal partnerships with a number of major companies with astonishing results.

‘ECONOMICALLY TIMES ARE HARD. MORE THAN EVER, ANTHONY NOLAN NEEDS YOUR BACKING. WITHOUT ANTHONY NOLAN PEOPLE WILL DIE, IT REALLY IS THAT SIMPLE. PLEASE SUPPORT THIS CHARITY, YOUR GENEROSITY IS VITAL TO MAINTAIN THE LIFESAVING WORK THAT THEY DO.’ WILL GREENWOOD, FORMER ENGLAND RUGBY PLAYER

Wilkinson board member, Karin Swann, embarks on an 80 mile fundraising walk, accompanied by Henny Braund, Anthony Nolan Chief Executive

In 2006, easyJet chose Anthony Nolan as its European charity partner after airline staff throughout Europe voted to support it. Donor recruitment clinics were held at easyJet offices and bases and many staff volunteered to become potential donors. Throughout the summer of that year, cabin crew asked passengers to donate any loose change to help fund the charity’s work. The response was overwhelming and the easyJet partnership raised more than £500,000 by the end of 2006.

The partnership was so popular among easyJet staff and passengers that the airline continued supporting Anthony Nolan for a further two years. The campaign raised an amazing £1,906,000 over three years. Anthony Nolan was also chosen as Wilkinson’s Charity of the Year for 201011. This partnership with the retailer raised an incredible £1,667,852 to fund the charity’s lifesaving work, as well as increasing awareness and the number of donors on the bone marrow register.

Staff at every level of the business became involved and 293 members of Wilkinson staff signed up to the Anthony Nolan register. Together, UK businesses have contributed millions of pounds to Anthony Nolan’s lifesaving work over the last 40 years. The charity continues to receive generous support from some of the UK’s biggest companies and many lives will be saved thanks to their efforts.

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MEDICAL BREAKTHROUGH WITH CORD BLOOD In 2008, the Anthony Nolan Cell Therapy Centre was officially opened in Nottingham. This advanced facility was established to process and store umbilical cord blood, which can sometimes be used as an alternative to bone marrow for patients in need of a lifesaving transplant. When a baby is born, its umbilical cord and placenta are usually thrown away as clinical waste. However, the blood in the cord and placenta is rich in stem cells. These stem cells can be used in transplants for patients suffering from blood cancer and serious blood disorders. The use of cord blood in stem cell transplantation is a relatively new breakthrough. While the idea of using cord blood had been around since the late 1980s, it only started to be seen as a viable method for use in transplants in the UK from the mid-2000s. In 2005, Anthony Nolanâ&#x20AC;&#x2122;s Director of Research, Professor Alejandro 114

Madrigal, worked with the charityâ&#x20AC;&#x2122;s Chief Executive, Dr Steve McEwan, on a proposal to establish an Anthony Nolan cord blood bank. It was a brave and visionary step for the charity and required a significant amount of expense to be committed to the project. For a charity, every piece of expenditure, no matter how small, needs to be carefully considered and justified. The enormous cost of setting up a national cord blood bank, Dr Steve McEwan, former Chief Executive who pioneered the opening of the cord blood bank

at a time when the medical procedure had not yet been introduced in the UK, would have made many people extremely nervous. However, Steve McEwan had an unusual background; he was a qualified Chartered Accountant and also had a PhD in biochemistry. So, he was able to see the enormous potential of this exciting new medical frontier, while also ensuring the charity was

committing its finances to an area he was confident would ultimately help save patients’ lives. The cord blood bank plan become a very personal project for Steve and he devoted much of his time and energy to see it received the resources required to make it a reality. He secured financial support for the Centre from the James Tudor Foundation and the East Midlands Development Agency. He also helped recruit Dr Sergio Querol, who had an enormous amount of expertise from his work at Barcelona’s cord blood bank. Dr Querol became the Medical Consultant of Anthony Nolan Cord Blood Services. The Centre was designed to process and store cord blood for national and international clinical transplantation centres and also to carry out world class research and supply cord blood to other approved research programmes throughout Europe. After three years of hard work, the Anthony Nolan Cell Therapy Centre opened in 2008. It was the UK’s first stand-alone, dedicated cord blood bank.

‘I ALMOST WASN’T AWARE OF THE CORD DONATION – IT WAS ALL DONE IN THE ROOM, CALMLY, QUIETLY AND WITH NO FUSS. I WAS BUSY GETTING TO KNOW MY GORGEOUS SON TOBY.’ CATRIONA FINLAYSON, TOBY’S MOTHER 115

A few days before the Centre was due to be officially opened, Steve McEwan was critically injured in a motorcycle accident. While it was a terrible blow for everyone at the charity, it was agreed that the opening should go ahead as it was something Steve had worked tirelessly towards. On 11 September 2008 the Health Secretary, Alan Johnson, officially opened the Anthony Nolan Cell Therapy Centre saying:

‘Anthony Nolan is already acclaimed worldwide, and the impact of the events here today, will be felt globally. The complex will help provide a lifeline for thousands and will reinforce the UK’s role as a research centre of excellence.’ Tragically, four days later, Dr Steve McEwan died in hospital. A commemorative plaque was later placed at the centre in recognition of his tremendous contribution in creating such a vital resource.

‘I AM SO HAPPY THAT MY BEAUTIFUL LITTLE BOY CAN HELP SAVE SOMEONE’S LIFE. IF ONLY I HAD KNOWN ABOUT THIS WITH MY FIRST BABY. I HOPE MY LITTLE BOY’S CORD DONATION CAN HELP A LOT!’ SOPHIE DIXON, MOTHER OF JACOB-LEE Health Secretary, Alan Johnson MP, opening the cord bank 116

RECRUITING EXPECTANT MOTHERS The opening of the Anthony Nolan Cell Therapy Centre in Nottingham was a huge achievement but the charity also needed to start obtaining sufficient supplies of cord blood to fill the bank. It did this by establishing its own Cord Blood Programme. Cord blood needs to be collected immediately following the safe birth of a baby, with the mother’s prior consent. The programme needed to include: an awareness programme within the hospital’s maternity unit;

staff to explain the process to expectant mothers and to gain their prior consent; and trained, dedicated medical staff who could extract the cord blood once the baby had been safely delivered by the normal hospital team so that there was no impact on the normal birth procedure. In 2011, the Sue Harris Trust provided Anthony Nolan with a grant of £600,000 to fund a new umbilical cord collection centre at the Royal Free Hospital in Hampstead. This enabled

the charity to increase the rate at which it could collect the lifesaving stem cells in umbilical cords. As part of a wider programme of funding, the Department of Health agreed to fund the charity’s cord work, amounting to £3m between 2011 and 2015. By 2013 Anthony Nolan had established cord blood collection centres in five NHS hospitals: King’s College Hospital London, Royal Free Hampstead, Birmingham Women’s Hospital, Leicester Royal Infirmary and Leicester General Hospital. Once the cord blood has been collected from these hospitals, it is then transported to the Anthony Nolan Cell Therapy Centre in Nottingham. The samples are analysed to determine whether they are suitable for use in clinical transplants. If they are, they can be ‘banked’, which makes them available for transplant centres urgently looking for a match for a patient in need of a stem cell transplant.

At the launch of the new Sue Harris Cord Blood Collection Centre in 2012: Jo Hemesley, cord transplant recipient; Anne Milton MP, Public Health Minister; Rubi Pabani and her baby who donated their cord and Miriam Gonzáles Durántez, Anthony Nolan supporter, lawyer and wife of Nick Clegg MP

Sometimes, the blood collected from the umbilical cord and placenta doesn’t have enough stem cells to 117

be used for a transplant. In this case, it can still be used in Anthony Nolanâ&#x20AC;&#x2122;s research programme, which strives to make sure all transplants have a successful outcome. There are a number of advantages to cord blood over bone marrow or blood stem cells. The first major advantage is that, having been previously collected, cord blood is immediately available for use if it is found to match a patient in need of a transplant. This is particularly helpful to patients who may be critically ill and may not survive the sometimes lengthy process of finding a donor and carrying out the further tests required to see if they are a suitable match. Another benefit of cord blood is that it often has more flexibility in terms of the matching process. Blood stem cells from adult donors need to be very closely matched to the patient, otherwise the transplant will not work. With cord blood, it is possible to have a degree of mismatch between the donor and patient, even to the point where the ethnic background of the baby Donor Heidi Cokayne and her daughter Zara 118

‘WE WERE GIVEN A LITTLE CERTIFICATE WHICH IS IN HER KEEPSAKE BOX, SO THAT WHEN SHE GROWS UP SHE KNOWS SHE DID HER BIT EVEN AS A BABY.’ HEIDI COKAYNE, CORD DONOR

whose cord blood is being used can be different to the ethnic background of the patient. In 2013, Anthony Nolan put in a successful bid to the Government’s Regional Growth Fund scheme to support its cord blood programme across England. The £1.7m funding will enable the charity to open three new cord collection centres and a second processing shift at its cord blood bank in Nottingham. In the future, it is hoped that cord blood will help address the growing demand for more donors. As the number of cord blood donations increases, there will be a greater opportunity to use this incredibly important resource to save more lives.

Donor Paulette Simpson with her son Ethan 119

THE FIRST CORD BLOOD RECIPIENT Derek Scott, 47, from Lincoln was the first UK resident to receive cord blood which had been collected by Anthony Nolan. â&#x20AC;&#x2DC;I noticed I kept bruising easily and was also feeling very tired all the time. I knew something wasnâ&#x20AC;&#x2122;t quite right but I also never imagined it would be anything so serious. During a routine check-up in October 2011, my blood test results showed there may be

something wrong and my doctor suspected I may have an underlying condition and referred me to have a bone marrow biopsy. On 14 October 2011, I was diagnosed with acute myeloid leukaemia (AML). It was a terrible shock, not only for me but for my wife, Tina, and my children Lewis, Euan and Eilidh. I underwent three rounds of chemotherapy, a gruelling treatment, but the leukaemia did go into remission.

However, doctors told me my only chance of a cure was a bone marrow transplant. Anthony Nolan searched the bone marrow register in the UK, then looked worldwide. In their entire search, only one person turned out to be a match for me. Unfortunately, due to a change in her circumstances since joining her national registry, she was not able to go ahead with the donation. It was such a bleak time and it really felt as though all hope had been lost. Then it was suggested that a cord blood transplant might be worth looking at as an option. At that stage, I was willing to try anything to have more time with my family. Because cord blood samples tend to contain fewer blood stem cells than a bone marrow sample, cord blood is often used in children and smaller women. Doctors told me they would need to find two suitable samples for me to make sure the transplant had a chance of success.

Derek Scott with his son Euan, who joined the register on his 16th birthday 120

‘I’M SO THANKFUL TO THE TWO WOMEN WHO DONATED THEIR CORD BLOOD. THEY HAVE GIVEN ME A FUTURE AND, WITHOUT THEM, I WOULDN’T BE HERE TO ENJOY THIS EXTRA TIME WITH MY FAMILY.’ DEREK SCOTT

The impact of survival: Derek Scott with his extended family

Incredibly, two cord samples had been donated by two different mothers in the UK and they were a match for me. I believe I was the first UK resident to receive cord blood which had been collected from two mothers in the UK. I received the cord blood transplant on 9 February 2012. Recovering from the cancer and the transplant was a long process and it was about four months before I started to feel anywhere near back to normal. But, in September

2012, I was able to return to work as a Sales Manager. Before all of this happened, despite having three children of my own, I had no idea that blood from the umbilical cord and placenta could be used to save a life. It’s such a waste that it is often just thrown away after the birth. I’m so thankful to the two women who donated their cord blood. They have given me a future and, without them, I wouldn’t be here to enjoy this extra time with my family.’

Donor Tiffany with her baby George

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‘I GOT INVOLVED WITH ANTHONY NOLAN, BECAUSE THEY ONCE HELPED A FRIEND OF MINE. SHE TOLD ME ABOUT THEM AND ASKED IF I’D BE INTERESTED IN DOING SOMETHING. I JOINED THEIR REGISTER, AND I’VE BEEN TELLING EVERYONE ABOUT THEM EVER SINCE.’ OLIVIA COLMAN, ACTRESS

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Photo: Dillon Bryden

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Register & Be a Lifesaver (R&Be) is a pioneering scheme that helps young people discover how they can save lives through bone marrow, blood and organ donation. The scheme was inspired by Adrian Sudbury, a young journalist with leukaemia.

In November 2006, 25-yearold Adrian Sudbury was working as a journalist in Huddersfield. He was celebrating the fact that he had just been promoted to digital journalist at the Huddersfield Examiner, and was looking forward to editing the newspaper’s website. Within a couple of days of taking on his new role, however, he became seriously ill and had to call in sick. A week later, with his health worsening, he drove himself to A&E. Tests revealed he had two different types of leukaemia, a combination so rare that he was thought to be the only person in the world to be diagnosed with it. Adrian had given blood regularly but had never joined the Anthony Nolan register because he had heard horror stories about the procedure. When the search for his own donor began and he learned that these stories were totally misleading, he was determined to raise awareness of the facts around bone marrow donation and the need for more people on the register.

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In March 2007, Adrian set up an online blog - Baldy’s Blog - detailing his experiences of leukaemia and the search to find a suitable donor. Later that year, Adrian found a matching donor and had his transplant soon after. The only details he knew was that it was a 30-year-old woman from Germany. He learned that, in Germany, awareness about bone marrow donation among young people was much higher than in the UK. Sadly, in 2008 Adrian’s cancer returned. Adrian had been sharing his progress with the readers of his blog, which won multiple awards, and he didn’t shy away from breaking the news to them. He explained that, after speaking to his consultants, he decided not to undergo further treatment as there was little chance of it having an impact on his aggressive cancer. Having been told he only had a few months left to live, Adrian dedicated his remaining time to raising further awareness about the importance of donation and said: ‘I have had an extra year of life thanks to

‘BEFORE I DIE, I WANT TO MAKE A LASTING CHANGE. I’M DETERMINED TO TRY AND EDUCATE MORE PEOPLE ABOUT WHAT IT IS LIKE TO BE A BONE MARROW DONOR.’ ADRIAN SUDBURY

the kindness of a 30-yearold stranger from Germany - it’s absolutely incredible. Before I die, I want to make a lasting change. I’m determined to try and educate more people about what it is like to be a bone marrow donor. There are still 7,000 people - children and adults in the UK alone - who are waiting to find a match. Without your help they have no hope. At least I was given a chance.’ In May 2008, with support from Anthony Nolan, Adrian decided to start a petition calling on the Government to make it a requirement that all 16-18 year olds would be educated about all types of donation bone marrow, blood and organ. He presented the 13,000-signature petition to the Prime Minister, Gordon Brown, and also met Health Secretary Alan Johnson and Education Secretary Ed Balls. Adrian died on 20 August, 2008. He was 27. His website, Baldy’s Blog, was flooded with moving tributes from readers who had followed his campaign as well as his personal

Adrian Sudbury’s campaign leaflet

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battle with leukaemia. The Prime Minister, Gordon Brown, also paid a personal tribute to Adrian, saying: ‘Adrian Sudbury was a true hero whose selflessness and courage made him an inspiration to all who knew him and to many who didn’t. Adrian’s campaign to raise awareness about blood, bone marrow and organ donation has already attracted thousands of supporters, myself among them, and his memory will continue to inspire action for many years to come.’ After Adrian’s death, the Government agreed funding to create a pilot programme of Register & Be A Lifesaver (R&Be), a campaign to alert young people to the fact that they could potentially save a life through bone marrow, blood and organ donation. The programme was supported by Anthony Nolan and NHS Blood and Transplant. R&Be involves trained volunteers visiting sixth forms, colleges and clubs and talking to people about the importance of donation and giving them all the facts so that they can make an informed choice 126

Adrian meets Prime Minister Gordon Brown to discuss the campaign

‘ADRIAN’S CAMPAIGN TO RAISE AWARENESS ABOUT BLOOD, BONE MARROW AND ORGAN DONATION HAS ALREADY ATTRACTED THOUSANDS OF SUPPORTERS, MYSELF AMONG THEM, AND HIS MEMORY WILL CONTINUE TO INSPIRE ACTION FOR MANY YEARS TO COME.’ GORDON BROWN, FORMER PRIME MINISTER

Students joining the register after an R&Be talk

about signing up to the Anthony Nolan register, giving blood and joining the organ donor register. Adrian’s wish for a lasting legacy was fulfilled when, in 2010, R&Be became a formal, long-term programme run by Anthony Nolan. It has gone on to become a hugely successful and influential educational initiative which is run in Bristol, London, Merseyside, the Midlands and Yorkshire. Adrian’s father, Keith Sudbury, is the R&Be Mentor for Midlands and Bristol. His job

is to train R&Be volunteers to deliver presentations, arrange talks with schools and run recruitment events for Anthony Nolan so young people can join the register. Keith also speaks directly to young people at R&Be events and shares Adrian’s story with them. In 2013, Keith said: ‘Through R&Be we have educated almost 100,000 students about the need for donors and the processes involved. The R&Be programme has helped to add more than 4,300 donors to the Anthony

Nolan register, more than 2,300 names to the organ donor register and more than 7,400 young people to the register of blood donors. A number of students who joined the Anthony Nolan register as a result of R&Be have come up as a match and have gone on to successfully donate their bone marrow to patients. We would not have been able to do this without our R&Be volunteers. They engage with students in an extraordinary way and are inspiring the next generation to become lifesavers.’ 127

STEPHEN AND JAMES’ STORY

Stephen Young joined the Anthony Nolan register when his brother, Christopher, was diagnosed with leukaemia. Sadly, Christopher died before he could have a transplant. Five years later, Stephen donated his blood stem cells to save the life of James Kent-Bramer, who had a life-threatening leukaemia diagnosis.

STEPHEN’S STORY: ‘When my older brother, Christopher, was diagnosed with leukaemia, we were told a bone marrow transplant was his only chance of survival. I was tested to see if I was a match for him. Unfortunately I wasn’t, but I joined the Anthony Nolan register as I wanted to do anything I could to help anyone else who was facing a similar situation. Christopher was only 24 when he died from Acute Myeloid Leukaemia on 9 September 1999. It was four days after my 18th birthday. I still miss him so much.

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He is the bravest person I have ever met, he is my idol. I always wear my St Christopher’s symbol on a chain on my neck. It was his and it is nice to think he is here with me. In 2004, five years after Christopher died, I came up as a match for someone who also had leukaemia. Of course, having lost my brother to the disease I didn’t hesitate to donate my stem cells. I wasn’t allowed to find out much information about the person I’d donated to for five years following the transplant as my recipient wanted to reach the point where he’d been given the ‘all clear’. Then, on Christmas Eve in 2010, I got a card from someone called Robin. I had no idea who Robin was and the card simply said ‘Happy Christmas’ and included a phone number. My wife was intrigued and encouraged me to phone the number. It turned out that Robin was the mother of James, who had received my blood stem cells. We were on the phone for hours. It was the best Christmas present I’ve ever had in my life.

In March 2011, James and I arranged to meet up. I travelled from Hull to London where James lives. It brought up a lot of emotions. I was very humbled to meet James and was also aware that if my own brother, Christopher, hadn’t died of leukaemia, I probably wouldn’t have joined the Anthony Nolan register and James may not be here today. I also had a strong feeling that Christopher was watching over me when I met James and that he was proud of what I’d done. I think donating your stem cells to save another person’s life is the most amazing thing anyone can do. If I could donate two or three times a year, I would keep doing it!’

JAMES’ STORY: ‘I was diagnosed with leukaemia when I was a teenager and I missed about a year of school because of the illness. I was so seriously ill that I was told my only chance of survival was a bone marrow transplant. I

‘I THINK DONATING YOUR STEM CELLS TO SAVE ANOTHER PERSON’S LIFE IS THE MOST AMAZING THING ANYONE CAN DO. IF I COULD DONATE TWO OR THREE TIMES A YEAR, I WOULD KEEP DOING IT!’ STEPHEN YOUNG, BONE MARROW DONOR

was lucky to find a match so quickly and was so grateful to the stranger who had been willing to donate to someone he didn’t know.

Stephen (left) with his bone marrow recipient James

After the transplant I went back to school and managed to get seven A* GCSEs and four As at A-level. I decided I wanted to study medicine and, during my studies, I ended up working in the same hospital where I’d been treated as a patient. After I’d reached the five-year mark of being cancer free, I felt the time was right to contact my donor. It was quite strange meeting Stephen face-toface. I was excited but also quite apprehensive. What do you say to the person who has saved your life? Thank you doesn’t seem quite enough. But, when we did finally meet, it felt great. Our families went out for a meal together and we all got along really well. If anyone ever has any doubt that joining the Anthony Nolan register is worth doing, I think Stephen and I are proof that it absolutely is!’

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ANONYMOUS LETTERS BETWEEN PATIENTS AND DONORS 16th December 2011 To my donor It has taken me a little longer to write this letter than I wished. Mainly because a simple thank-you seemed inadequate, and worth very little compared to what you have done for me. Though there is no other way to express how I feel. I would like to thank you for your amazing gift, without which I would not be here today. You have given me the opportunity to live. And much more than that. I am not sure how much you think about what you have done. But you have cast a stone into a pool of water and the ripples are perpetual, they just go on and on. I am married and have five children. My eldest is at university. She struggles with her own illness but has shown great fortitude. She is a sweet girl, with time for everybody. I see the disabled and less fortunate catch her eyes, she smiles at them and their faces light up. My youngest daughter is taking her A levels. She finds law hard. She wants to go on to university and then work for a charity and stand up for injustice. I have known since she was a baby that she will never give up. They are lovely girls and if I had died I know they would have been in pieces. It was hard telling them in February that I had leukaemia, but of course things are different now. Then we have three young boys – all under the age of seven. Our eldest loves everything to do with animals. He particularly likes whales. There is a box of toy whales wrapped up in different shades of blue tissue paper to look like the sea, and we know this will just bowl him over on Christmas Day. Our middle boy does whatever he thinks best! He makes his own lunch at 10am, draws amazing pictures on our walls and even cuts his own hair when he thinks it is too long. There is not much point in giving him any advice, he has been quite clear in saying that he thinks he is smarter than we are anyway. Our youngest loves anything to do with cars, tractors and other machinery that moves. He has a sit on tractor wrapped up for Christmas, with a box on the back. He is tidy and organised and we know his other Christmas toys will be arranged neatly in the box just as soon as he has folded and cleared the wrapping paper away. He also has impeccable eating matters, and actually uses a knife and fork. Shame none of this rubs off onto his older brothers! My wife has her hands full as you can see. She has also been busy refurbishing a house for us to move in to, and it has been a difficult year for her. But I am here, and that makes all the difference now. It is going to be a great Christmas with all of us together. Were it not for what you have done, it is difficult to see how any of their lives would be the same again. Not only can I now do things I want with more vigour, but you have given my family a better future also. As I say the ripples never cease. The company I work for are also organising talks on bone marrow donation and we have an initial twenty-five people coming forward to learn about donating. And now I can look forward to some fund-raising. My approach to live is different. I have more energy, seem more organised and want to do more now than ever before. No minute is ever wasted. It has been, literally, life changing. I am now cured of leukaemia. We remember what you have done, everyday. The ripples never cease. I hope that I live the rest of my life in a way that you would approve. It is my intention to do so. With the greatest thanks, love and respect for you. From myself and my family. Your recipient.

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‘I AM NOT SURE HOW MUCH YOU THINK ABOUT WHAT YOU HAVE DONE. BUT YOU HAVE CAST A STONE INTO A POOL OF WATER AND THE RIPPLES ARE PERPETUAL, THEY JUST GO ON AND ON.’ BONE MARROW RECIPIENT

‘IT HAS BECOME CLEAR TO US THAT WHAT YOU HAVE DONE FOR OUR LITTLE GIRL HAS SAVED HER LIFE, AND FOR THAT, NO ‘THANK YOU’ COULD EVER BE BIG ENOUGH. WE WOULD JUST LIKE YOU TO KNOW THAT YOU HAVE OUR UNDYING GRATITUDE, RESPECT AND ADMIRATION FOR WHAT YOU HAVE DONE FOR US.’ MOTHER OF A BONE MARROW RECIPIENT

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‘I NEVER EXPECTED MY BUCKET LIST TO GET SO MUCH ATTENTION AND I FEEL SO LUCKY THAT I’VE BEEN ABLE TO DO SO MUCH. I WANT TO HELP AS MANY OTHER PEOPLE AS I CAN. GETTING PEOPLE SIGNED UP TO THE REGISTER MEANS A LOT TO ME.’ ALICE PYNE

Alice Pyne, the remarkable teenager who became famous after creating a ‘bucket list’ of things to do before she died. Her top wish was to get as many people signed up to a bone marrow register as possible

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THE CHANGING FACE OF THE CHARITY Most organisations have an official image to help represent their work in a visual way. This visual communication, or brand, can be a vital way of helping an organisation to tell its story. Over time, however, what was once visually significant can, decades later, seem less meaningful. Anthony Nolan is no exception and, in 2009, the charity made the biggest change to its visual appearance since it was created.

Anthony Nolan spent most of his short life in hospital or in isolation to reduce his risk of picking up an infection. Occasionally, when he was well enough, he would go for a walk with his mother, Shirley, in the fields surrounding their home in Thanet, Kent. Unable to play with other children, or even to stroke the horses on nearby farmland, Anthony took great pleasure in some of nature’s simple offerings. His favourite flower was the daisy and he would get much joy from picking this flower and carrying it with him on these precious outings. When Anthony died in 1979 at the age of seven, Shirley was determined to carry on with the charity’s work in Anthony’s name and decided the daisy would be a fitting emblem for the charity’s logo. The daisy became the ‘symbol’ of the charity. It appeared on all posters, flyers, mailshots and fundraising materials. It acted as a visual reminder to people who had followed Anthony’s journey, or been directly involved in supporting the appeal to save him, that his legacy lived on through the charity’s work.

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Anthony Nolan on a rare outing searching for daisies – the flower which inspired the original logo

The logo underwent a few small changes over the decades. The changes were subtle but the updated designs helped the daisy refresh itself in keeping with the evolving styles of each decade. When Henny Braund was appointed as Anthony Nolan’s new Chief Executive in January 2009 she decided to take a fresh look at the charity’s brand. She knew it needed to be relevant to the broad audience Anthony Nolan needed to engage with: funders, volunteers and, most importantly, younger potential donors.

Henny said: ‘The Anthony Nolan daisy was a logo that was close to the hearts of older people who were alive when Shirley Nolan was battling to save her son’s life. But, when we thoroughly researched it and spoke to all the important audiences we needed to reach, it became clear that younger people who were born after Anthony Nolan died didn’t immediately understand the significance of the daisy. Young men, in particular, are vitally important to attract to the register, as doctors are more likely to choose them to donate their stem cells to a patient. So, I knew we had to come up with a bold and modern visual identity which would appeal to as many people as possible. It also needed to begin to tell the story of the lifesaving work Anthony Nolan carries out on a daily basis. I wanted the logo to help everyone who comes into contact with the charity understand what we are working to achieve.’ The new logo uses connections between letters to convey the importance of the matching process

Stuart Ferguson, father of transplant patient Ryan, shows his passion for the charity with a leg tattoo

Liverpool Goalkeeper Brad Jones helping to raise awareness with Anthony Nolan branded gloves

involved between the donor and patient. The charity also created a new strapline ‘Be A Match, Save A Life’.

I’m also pleased that the link to Anthony’s favourite flower still lives on through the annual Daisy Ball, which raises a large amount of money to support our lifesaving work carried out in his name.’

Henny adds: ‘It’s always a challenge to refresh a brand which has been around for decades but I think the team did a terrific job in creating a dynamic and exciting new look. It’s certainly helped us attract thousands of young men to join the register.

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ALICE’S BUCKET LIST

In October 2010, at the age of 14, scans showed her cancer had spread and was terminal. Her mother, Vicky, encouraged her to start an online blog sharing her experience of fighting the cancer. In June 2011, Alice decided to set up a blog and started by creating a ‘bucket list’ which listed all the things she wanted to do before she died.

Alice Pyne was an inspirational teenager who became famous around the world after creating a ‘bucket list’ of things to do before she died. Her top wish was that everyone who was eligible would sign up to a bone marrow register.

Alice’s blog became an internet sensation after being shared extensively on Twitter. It attracted interest from people around the world including many celebrities and politicians.

register and registers around the world, to help save the lives of other people. In July 2011, Alice met Prime Minister David Cameron at 10 Downing Street to talk to him about the importance of the work of the Anthony Nolan register. She was accompanied by her parents, her local MP, John Woodcock and Henny Braund, Anthony Nolan’s Chief Executive. Alice also met the Leader of the Opposition, Ed Miliband.

Alice Pyne, from Ulverston in Cumbria, was diagnosed with Hodgkin Lymphoma in February 2008 shortly after her 12th birthday.

Many people pledged to help Alice fulfil her bucket list which included entering her Labrador Mabel into a dog show, meeting the pop band Take That, swimming with sharks and going to her school leavers prom. She achieved all of these and much more.

After the meetings Alice said: ‘It has been an amazing day - David Cameron and Ed Miliband were both really keen to do more to raise the profile of this campaign. I was nervous before both meetings but they were both friendly and said they were determined to help get more bone marrow donors signed up. Of all the amazing things I have ticked off my bucket list, this is the one I am most proud of.

A male bone marrow donor was found as a match for Alice but doctors said her chemotherapy treatment had not been successful enough to allow the transplant to go ahead.

One of Alice’s most ambitious wishes was to get everyone who was eligible to join a bone marrow register and she spent much of her time promoting the importance of joining the Anthony Nolan

I hate thinking of all the people who have died because there wasn’t a match for them. That includes several children in the same boat as me who became my friends. Unless

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‘I WILL NEVER FORGET ALICE. SHE WAS SUCH AN INSPIRATIONAL YOUNG WOMAN WHO HAS LEFT THE MOST INCREDIBLE LEGACY.’ HENNY BRAUND, CHIEF EXECUTIVE

Alice meeting the Prime Minister David Cameron in July 2011

we can get more people to sign up to the bone marrow registers, many thousands more won’t make it in future.’ In 2012, Alice and her sister Milly, received British Empire Medals for services to charity after raising more than £100,000 and inspiring thousands of potential bone marrow donors. Alice also won the Pride of Britain Teenager of Courage award in the same year and launched her own charity, Alice’s Escapes, which

works to organise free breaks for families with a seriously ill child. On 12 January 2013, Alice died peacefully with her mother Vicky, father Simon and younger sister Milly by her side. She was 17 years old. Henny Braund, Anthony Nolan’s Chief Executive said: ‘I will never forget Alice. She was such an inspirational young woman who has left the most incredible legacy. We have already seen the impact of her work. One

young man, Sean Hagan, who signed up to the Anthony Nolan register in direct response to Alice’s appeal went on to donate his blood stem cells in January 2012. His recipient is doing well. I know that, thanks to Alice’s desire to help other people, many other lives will be saved in the future.’ Alice’s sister Milly continues the blog in her memory - http://alicepyne. blogspot.co.uk 137

REGISTRATION REVOLUTION

In 2010, Anthony Nolan revolutionised the way potential donors can sign up to the register. Instead of taking a blood sample from people who wished to sign up, a quick and simple saliva test was introduced.

When a person signs up to the Anthony Nolan register, a sample of their DNA needs to be taken. The process to identify the human leukocyte antigen (HLA) type, known as tissue typing, is central to the whole concept of matching a donor to a patient. Unlike blood groups, which have a handful of types, the combination of different tissue types runs into the millions. People inherit their tissue type from their parents, with each parent contributing

half of their tissue type. This process of splitting and joining DNA to create a modified tissue type has led to a phenomenal number of combinations throughout the world. When the Anthony Nolan register was created, the most effective way to test someoneâ&#x20AC;&#x2122;s tissue type was through a blood sample. As taking a blood sample is an invasive procedure, it meant a trained phlebotomist was required at every recruitment event.

Rugby players Will Carling and Rory Underwood having blood samples taken when the England Rugby Team joined the Anthony Nolan register in the early 1990s 138

Blood samples also had to be kept at a low temperature and processed within 24 hours. This was because the tissue typing used to be performed on live white cells or lymphocytes and antibodies were used to detect proteins on the surface of the live cells. If the blood was not processed in time, these cells would die. So, while not insurmountable, this method did create additional logistical and financial challenges for the charity. As the only viable method of taking a sample, however, Anthony Nolan along with every other registry around the world used blood samples for decades. In 2010, Anthony Nolan revolutionised the way it went about collecting a tissue sample from anyone wishing to join its register. It had been discovered that a high quality sample for tissue typing could be taken from a personâ&#x20AC;&#x2122;s saliva, rather than from a blood sample. The tissue typing of saliva offered an additional benefit in that it did not need to be processed as quickly as a blood sample.

Why spit could be the key to saving so many sufferers

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‘I KNOW THAT MANY PEOPLE ARE PUT OFF JOINING THE ANTHONY NOLAN REGISTER BECAUSE THEY THINK DONATING BONE MARROW IS A HORRIBLE AND SCARY PROCEDURE. I WANT EVERYONE TO KNOW JUST HOW SIMPLE IT IS.’ KAANTHAN JAWAHAR

With this breakthrough in knowledge, the charity decided to convert entirely to a system where potential donors could spit into a plastic tube, which contains a preservative to protect the contents of the sample for several years. The tube is sent back to the Anthony Nolan laboratory, where staff can determine the tissue type.

national, regional and local newspapers.

This new method created a revolution in the way individuals could join the register.

Since taking this pioneering step to change the way tissue samples are collected, Anthony Nolan has trebled the number of potential donors joining the register at each recruitment drive. The charity is now exploring new ways to use the tissue typing process to identify the ideal donor for each patient.

Saliva recruitment events are easier and more costeffective to run as a trained phlebotomist is no longer required to take blood. This means recruitment drives can be run by volunteers and can take place at a wider variety of locations. Saliva samples also allow people to donate via the post, without the involvement of a medical professional. This has made joining the register far easier. The charity launched the new recruitment method in a blaze of publicity. The story was featured across the national media including numerous stories on BBC TV and radio stations, as well as widespread coverage in the 140

Following the successful launch, Anthony Nolan created a campaign ‘Fit to Spit’ aimed at young men, encouraging them to join the register. The campaign was well received by young men and gained further supportive coverage from the media.

These changes to the recruitment process, based on the research carried out by Anthony Nolan scientists over many years, have created a fundamental shift in the way the register operates. It has significantly enhanced the chances of a match being found more quickly for a patient, which means Anthony Nolan can play a greater role than ever in saving more lives in the future.

KEEP CALM AND COURIER ON

It is very common for the person who donates their blood stem cells to be in a different location from the patient who will be receiving them. This means stem cells often need to be transferred across long distances, sometimes between continents.

When a patient requires a transplant, the timely and safe delivery of the donor stem cells is critical. Before a transplant, patients undergo major treatment â&#x20AC;&#x201C; known as conditioning â&#x20AC;&#x201C; to wipe out their own immune system in preparation for receiving the replacement cells from the donor. Once the cells have been collected, the patient

needs to receive them within 72 hours, otherwise the cells will die. Anthony Nolan has a team of trained, dedicated volunteers to carry out this important courier work. These couriers are committed to making sure the stem cells arrive safely and on time, even in the face of major world events.

Anthony Nolan volunteer couriers promoting the service 141

WORLD TRADE CENTRE ATTACK On 11 September 2001 the world was shocked by the terrorist attacks on the Twin Towers in New York and other targets in the USA. For Anthony Nolan, the tragic events created an additional drama. About 15 minutes before the first plane struck the World Trade Centre, a donor in the United States had undergone a bone marrow extraction. The stem cells were intended for a patient in the UK, who had already undergone a complete conditioning regime in advance of receiving the transplant. This meant he had to receive his transplant within 72 hours.

down its airspace and all civilian flights were grounded. Anthony Nolan had to find a way to get the stem cells back to England within the 72 hour time period. The charityâ&#x20AC;&#x2122;s staff worked throughout 11 and 12 September to find a solution. Eventually, with assistance from the National Marrow Donor Program in the United States, a seat was secured on a private jet which was flying out on 13 September.

It was the first flight to leave the United States following the attacks. The courier boarded the flight and landed at a military base in north London late on the evening of 13 September. The stem cells were taken directly to the transplant centre. The patient received his transplant the next morning on 14 September, just within the 72 hour window.

One of Anthony Nolanâ&#x20AC;&#x2122;s couriers had flown from London to New York and arrived at the US hospital to collect the marrow at 9.30am on 11 September. By this time, the second tower at the World Trade Centre had been hit and a few minutes later, a further plane hit the Pentagon. It became clear a terrorist attack of unprecedented magnitude was taking place and the United States closed 142

9/11: How stem cells nearly didnâ&#x20AC;&#x2122;t make it to a waiting patient in the UK

VOLCANIC ASH In April 2010, air travel was thrown into disarray once again due to the Icelandic volcanic eruption, which threw an enormous cloud of ash into the atmosphere. Airspace across Europe was closed due to safety concerns about planes flying through the ash cloud. Sixteen patients in the UK had their planned transplants put at risk as a result of the ash cloud because they were awaiting stem cells from international destinations. Anthony Nolanâ&#x20AC;&#x2122;s volunteer couriers had to

find alternative ways to get the cells from locations including Europe, Canada, the USA and Israel to the UK in the fastest possible time. Some volunteers had to make epic train journeys across Europe to ensure the stem cells arrived within the 72 hour window. The charity even appealed on Twitter for a Eurostar ticket to help a volunteer courier get back to the UK on time. The overwhelming public response to the Twitter appeal gave an early example of the power of social media.

Thanks to the dedication of the couriers, all the stem cells were delivered within the 72 hour window and all sixteen transplants were able to go ahead. These examples highlight the commitment of Anthony Nolanâ&#x20AC;&#x2122;s staff and volunteers and their ability to overcome seemingly insurmountable hurdles to ensure stem cells are delivered to patients on time, to give them the best possible chance of survival.

The volcanic ash cloud in 2010 put 16 transplants at risk 143

THE VOLUNTEER COURIER Peter Hodes is one of Anthony Nolan’s 40 volunteer couriers. Peter lives in Camden, north London, which is a short distance from the charity’s head office. Peter had been volunteering for Anthony Nolan for two years when he decided to train as a courier. Anthony Nolan provides an initial training session for volunteer couriers covering all aspects of the work involved in transporting stem cells safely and effectively. The charity’s couriers need to attend further training sessions twice a year to ensure their skills and knowledge of procedures are always up-to-date. Volunteers are initially asked to make three trips to transplant centres in Greater London, followed by a further three around the UK before being considered for international trips. Peter said: ‘I have done more than 50 pick-ups since starting as a courier in March 2012. As I am self-employed I am able to fit the trips around my working, social, cultural and charitable life. It is a wonderful mix and 144

Peter Hodes boarding a plane with stem cells for a waiting patient

sometimes I feel that my feet don’t touch the ground, and that is just how I like it. The furthest I have been is to Brisbane in Australia. The return journey from the hospital there to the Children’s Hospital at the

Manchester Royal Infirmary took 37 hours. The journey included two lengthy flights, a long layover in Kuala Lumpur and then a train journey to Manchester, but the sense of satisfaction of handing over the stem cells, particularly as they were for

‘I GET HUGE SATISFACTION FROM BEING AN ANTHONY NOLAN COURIER. EVERY TIME I DELIVER A BAG OF STEM CELLS, I KNOW THAT I AM HELPING TO POTENTIALLY SAVE A LIFE.’ PETER HODES

a child, was immense – I slept very well that night! While not comparable to the situations on September 11 and the Volcanic Ash cloud, I’ve also had an experience of overcoming hurdles to get stem cells back on time. In June 2013, I had picked up stem cells in Providence, Rhode Island, and was bringing them back to the UK for a patient. When I arrived at the airport to fly back with my precious cargo, I discovered that the first hurricane of the season was working its way up the eastern seaboard of the United States. My flight to Washington was so severely delayed it meant I would miss my onward connection to London.

Peter Hodes hands over a bag of stem cells he has transported

I explained the seriousness of the situation to the check-in clerk and she immediately dropped everything, told her colleague to continue checking in other passengers and then proceeded to bust a gut to get me back to London.

I was re-routed via Newark. Needless to say when I boarded the plane – a tiny Dash propeller one – the passengers were none too pleased. Then there was a problem of finding space for my box as the overhead locker was too small and it would not fit under my seat. It ended up in the cockpit between the pilot and co-pilot.

London. Amazingly, I arrived at my final destination in Oxford two and a half hours earlier than expected - much to the delight of the staff there!

After numerous phone calls, much tapping in on her computer keyboard and a flight being held on the ground for twenty minutes,

We landed in Newark in a downpour, as a result of the approach of Hurricane Andrea, with just enough time to board the plane to

Anthony Nolan is a remarkable charity and I hope that there will be a role for me for many years to come.’

I get huge satisfaction from being an Anthony Nolan courier. Every time I deliver a bag of stem cells, I know that I am helping to potentially save a life.

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‘IT IS NOT OFTEN THAT YOU GET TO SAVE SOMEONE’S LIFE. IT MAY HAPPEN A LOT IN NOVELS AND IN FILMS, IN DRAMATIC AND DARING WAYS. BUT THAT ISN’T FOR MANY OF US. YET THROUGH ONE SMALL GESTURE; BY SIGNING UP TO THE ANTHONY NOLAN REGISTER, YOU COULD DO JUST THAT. YOU COULD SAVE A LIFE, WITH NO NOISE, AND NO FUSS, BUT WITH THE COOL CONFIDENCE THAT WHAT YOU ARE DOING IS SO SIMPLE, SO UTTERLY SELFLESS AND SO UTTERLY RIGHT. WHY WOULDN’T YOU?’ DR CHRISTIAN JESSEN, DOCTOR AND BROADCASTER

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JOINING FORCES: CREATING A SINGLE REGISTER Anthony Nolan was the world’s first bone marrow register but, after its creation, other registries were set up in the UK. The British Bone Marrow Registry is run by the NHS as part of its Blood & Transplant service (NHSBT). In 2012, these two registries were aligned and the Welsh Bone Marrow Donor Registry also joined forces in 2013. Anthony Nolan now manages this single register and is the first point of contact for Transplant Centres in the UK, bringing many benefits to doctors and patients. Following the creation of the Anthony Nolan register in 1974, two other registries were set up in the UK: the British Bone Marrow Registry, which was run by the NHS and the Welsh Bone Marrow Donor Registry, which was run by the Welsh Blood Service. Multiple registries are often started for historical operational reasons. However, over time, operating multiple bone marrow registries within the same country can create 148

unnecessary complications. The biggest one can be that transplant doctors need to conduct more than one search to find a match at a time when their patient may be living on borrowed time. In 2010 the Stem Cell Strategic Forum Report set out a number of recommendations. These included the creation of a ‘FIT panel’ of young male donors whose stem cells would have high resolution tissue typing, increasing the likelihood of them being matched with a patient. They also recommended a significant increase in the number of cord collections to meet growing demand, and finally the alignment of the Anthony Nolan and British Bone Marrow Registers.

So, there was considerable excitement on 13 July 2011 when the UK Minister for Public Health, Anne Milton MP, announced an initial £4 million of funding to allow these recommendations to be driven forward. Over the course of four years the funding to both organisations totaled £12m and by 2015 tens of thousands of young men will have been recruited to the aligned register and thousands more cords collected. When it came to aligning the registers there was also a certain amount of trepidation. Both organisations had wellestablished registries with hundreds of thousands of potential donors and they knew it would be

an enormous logistical challenge to merge them without disrupting the work of doctors and affecting the wellbeing of patients. However, both Anthony Nolan and NHSBT were willing to rise to the challenge and worked together for six months to overcome all the potential pitfalls of such an historic undertaking. In January 2012, after a huge collaborative effort, Anthony Nolan began operating a single UK registry â&#x20AC;&#x201C; the Anthony Nolan & NHS Stem Cell Registry - through which transplant centres could access donors, and receive donations and cord blood units from the registries and cord blood banks which work across the UK. It meant doctors only needed to request a single search to cover all these resources.

Michael Hoddinott, Laboratory Supervisor, searching through frozen DNA samples

Anthony Nolan and NHSBT also used the government funding to invest in new systems to improve the quality of stem cell matching for patients. This has allowed Anthony Nolan to speed up the process of identifying a match for a patient, which is critical to improving transplant outcomes.

The funding also allowed both NHSBT and Anthony Nolan to expand cord blood collections at their existing partner hospitals to 24 hours a day, 7 days a week. This increase in operating hours meant an additional 2,000 cord blood units can be collected every year.

The collaboration has been a huge success and the improved systems, recruitment of young men and increase in cord collections will undoubtedly help save more lives in the future.

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HELPING TO DIVERSIFY THE REGISTER devastating. Not just for me but also for my family. We went from a relatively busy ‘normal’ life into a world of uncertainty about the future.

Rik with a police colleague, encouraging other police officers to join the register

Rik Basra, from Leicester, was working as an Inspector with Leicestershire Police when he was diagnosed with Acute Myeloid Leukaemia in 2009. He needed a blood stem cell transplant but donors from the Asian community only make up four per cent of the Anthony Nolan register. This made Rik’s chances of finding a match very slim. ‘I had always considered myself to be very fit and active, a regular gym goer and football player. So, when I was diagnosed with Acute Myeloid Leukaemia (AML) in 2009 it was nothing short of 150

After five months of intensive chemotherapy followed by months of recovery I eventually returned to work and started to pick up the threads of my life. I was closely monitored by my medical team following the treatment but I felt I was constantly looking over my shoulder in case the cancer returned. I eventually reached the twoyear milestone, which was significant as that is when, statistically, the likelihood of the cancer recurring starts to diminish. We started to hope that, maybe, the nightmare was behind us. Unfortunately, this was not the case. I was re-tested in autumn 2011 following what appeared to be a simple bout of flu; I went for routine blood tests and was told the leukaemia had returned. I returned to hospital once again to undergo further chemotherapy and was told that, without a blood stem cell transplant, I would not survive. Tests confirmed I did

not have a sibling match so I required an unrelated stem cell donor. Anthony Nolan carried out a search of the register but, even before the results came back, I had been advised that there are significantly fewer donors on the register from the Asian sub-continent - just 4% of the database. I wondered why this was, given the vast numbers of British Asians living in the UK. I could guess at some of the possibilities: a lack of knowledge of blood cancers as a disease affecting minorities; little or no knowledge of the significance of stem cell donation; little or no knowledge of the shortage of donors and, perhaps most significantly, a misplaced fear of the registration and donation process. The irony is that medical advances have now made both the registration and donation process fantastically simple and straightforward. My time in hospital was one of frustration and anguish as I neared the end of the chemotherapy treatment without a stem cell donor in sight. It was not only stressful for me, it was also incredibly

‘I HOPE MY CAMPAIGN WILL LEAD TO A TIME WHEN IT BECOMES FAR EASIER FOR MATCHES TO BE FOUND FOR ALL PEOPLE, REGARDLESS OF THEIR ETHNIC BACKGROUND.’ RIK BASRA

tough for my wife, Kaz, my daughters and my extended family and friends. Having failed to find a suitable match for me in the UK, Anthony Nolan conducted an international search. Luckily, at the eleventh hour, a matching donor was found in Germany. My hero was a stranger who, at some point, must have decided to go to the trouble of filling in a simple form and spitting into a tube. That’s all it took for them to register. No doubt a little time out for them but absolutely lifesaving for me. Once I’d recovered from the transplant, Kaz and I decided to set up the Rik Basra Leukaemia Campaign. My campaign has one simple aim: to increase the number of stem cell donors on the Anthony Nolan register, with a particular focus on the South Asian population. The response has been fantastic and many of my colleagues in the police also signed up as a result. I also supported an Anthony Nolan campaign to attract more Asian donors to the register.

I hope my experience and campaign will lead to a time when it becomes far easier for matches to be found for all people with blood cancer in need of a lifesaving transplant, regardless of their ethnic background.’

Rik showing Prince Edward a spit kit at De Montford University

Rik encouraging members of the Sikh community to join the register in May 2013 151

CHANGING THE JOINING POLICY Anthony Nolan has always been a pioneering charity. From creating the worldâ&#x20AC;&#x2122;s first bone marrow register to switching to saliva samples for tissue typing potential donors, the charity has been ready to lead the way. In October 2012, Anthony Nolan showed its pioneering spirit again by being the first bone marrow register in the world to make a significant change to the age range of people eligible to join its register.

taken. Anthony Nolanâ&#x20AC;&#x2122;s Research Institute used the knowledge it had gained over many decades to determine the ideal shape and size of the register.

and ethnicities was also identified as a vitally important component of a register which will meet the future needs of patients.

It became clear, through analysing data, that younger people are more likely to be picked as donors and, given their youth and general good health, there are fewer potential complications for the donation process. This all leads to better outcomes for patients.

As a charity, Anthony Nolan also needs to spend its resources wisely. It costs around ÂŁ100 to add each donor to the register so it is vital to recruit the people most likely to be chosen as donors and who will remain on the register for the longest time, until their 60th birthday.

A good mix of people from different communities

All this evidence, amassed over a considerable period

Anthony Nolan has always used scientific evidence as the basis for its medical decisions. On 1 October 2012, the charity took the ground-breaking decision to change its joining policy to allow 16 year olds to join the register, the first bone marrow register in the world to do so. At the same time, Anthony Nolan lowered the upper age limit for people signing up, bringing it down from 40 to 30 years old. This bold step was thoroughly researched before a final decision was 152

Bethany Garwood, James Dunstan and Thomas Orme some of the first 16 year olds to join the register

‘NOT ONLY ARE WE RECRUITING FASTER THAN EVER BEFORE, BUT WE’RE RECRUITING THE DONORS WHO ARE MOST LIKELY TO BE ABLE TO SAVE LIVES.’ ANN O’LEARY, HEAD OF REGISTER DEVELOPMENT

of time, made it clear that the shape and make-up of the register was just as, if not more, important than its overall size. In the first ten weeks of the new policy being implemented Anthony Nolan recorded an incredible 8,292 online applications. This was an increase of 25% on the same period the year before

and well over 50% of those that applied were aged 16-22. Ann O’Leary, Head of Register Development for Anthony Nolan, said: ‘We wanted to reduce the average age of our register because younger donors are more likely to be chosen to donate. They are also statistically less likely to suffer from conditions

which may delay or prevent donation altogether. However, we didn’t predict that there would be such a fantastic response from the general public, meaning that not only are we recruiting faster than ever before, but we’re recruiting the donors who are most likely to be able to save lives.’

Young people join the register at an R&Be event in Huddersfield 153

A LEGACY FOR LUCAS

Almost 40 years after Anthony Nolan was born with Wiskott-Aldrich syndrome – a rare and life-threatening blood disorder – another boy, Lucas Bennett Ruddy, was born with the same condition. Lucas’ parents, Ben and Kim, explain how their son’s story turned out very differently, thanks to Anthony’s legacy.

‘Lucas was born in November 2010 and, very quickly, we noticed he was having some health problems. While it didn’t seem anything too major initially we had to take Lucas to the GP a few times within the first month. Then, when Lucas was six weeks old, he developed pneumonia. The blood tests the doctor carried out showed that Lucas had an abnormal blood cell count but it took a further four months until he was diagnosed with WiskottAldrich syndrome. It’s such a rare condition that only about four children a year in the UK are born with it. It was devastating to be told that he had such a rare and life-threatening condition. It’s really hard to even take that kind of news in. Everything just becomes a blur. Lucas was treated at Great Ormond Street Hospital and they told us that he would need to have a bone marrow transplant. They carried out tissue typing for Lucas and then checked to see if his brother, Jay, or sister, Lola, were a match. They weren’t. That’s when we found out about Anthony Nolan. We

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hadn’t heard of the charity before but we quickly learned about the incredible work it carries out to find matching donors for people like Lucas. Fortunately, a match was found for Lucas within a month, which is very fast. We were very lucky. It was an emotional day, in April 2012, when the small red bag of donor cells arrived at Lucas’ hospital bedside and was infused into his little body. This amazing gift had arrived thanks to a charity we had never heard of before and from a donor we may never meet. All we knew was that a 27 year old man from the UK had decided to help a complete stranger – our beautiful son Lucas. That day was a real turning point for us. We went from feeling completely devastated to a sense that things were going to turn out ok. It gave us hope and, while things were still difficult for another year as Lucas battled to get better, we always had a light at the end of the tunnel from that point. As a family, it moved us from facing a huge problem to having a solution and that’s very powerful.

‘WE DO GET EMOTIONAL THINKING ABOUT THE FACT THAT SHIRLEY AND ANTHONY NOLAN WERE IN THE SAME SITUATION AS US 40 YEARS AGO.’ KIM RUDDY

Lucas and his mother Kim

Lucas hands over the cheque from the Land’s End to John O’Groats bike ride

We do get emotional thinking about the fact that Shirley and Anthony Nolan were in the same situation as us 40 years ago and yet the consequences for them were devastating. If they hadn’t gone through that journey and left such an extraordinary legacy by creating the Anthony Nolan register, we would possibly have ended up in the same position as them.

We have been to look round Anthony Nolan’s laboratories and we were struck by the fact that there are absolutely dedicated staff carrying on that legacy today. That’s why Ben cycled from Land’s End to John O’Groats in 10 days with Lucas’ two godfathers. We know that the £123,000 which was raised for Anthony Nolan as a result is going to make such an important difference to other families in the future.’

Lucas during treatment

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‘WE ARE INCREDIBLY GRATEFUL TO ANTHONY NOLAN FOR GIVING ESME A FIGHTING CHANCE AT LIFE, AS WITHOUT THIS ORGANISATION THIS WOULD NEVER HAVE BEEN POSSIBLE.’ NAOMI CLAYSON, MOTHER OF ESME

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COMING FULL CIRCLE: ANTHONY’S NURSE BENEFITS FROM HIS LEGACY same children, I got to know them, and their families, very well. In my second year, I was assigned to care for a little boy called Anthony Nolan. I had no idea, at that time, just how much of an impact Anthony would ultimately have on my life.

Sarah as a trainee nurse in the 1970s

When Sarah Coomer was 19 years old and training to be a nurse, she cared for Anthony Nolan while he was a patient at Westminster Hospital. Almost 40 years later, after being diagnosed with acute myeloid leukaemia, Sarah received the ultimate legacy from Anthony; a blood stem cell transplant that saved her life. ‘I started my nursing career at Westminster Hospital in 1975 where I looked after children who were seriously ill and needed to be kept in medical isolation. Because I spent my time caring for the 158

I remember Anthony being very poorly indeed but he also seemed such a normal little boy in terms of his behaviour. Despite being so ill he would still smile and want to play. I think it was harder for Shirley in many ways, to see her son being confined to isolation to reduce his risk of infection. The technology for keeping children in medical isolation was quite primitive in those days. It was essentially a plastic tent that the children had to live in and we would care for them from the outside. They couldn’t have much human contact and that could be a distressing experience, not only for the children and their families but for the nurses too. But, we all worked hard to make sure they were looked after as well as possible.

I got to know Shirley over the time I cared for Anthony and I could see she was completely devoted to him. She was so desperate to find a donor who could help save his life and to establish a bone marrow register. It was such a shame that no-one was found for him in time. In 2011, 35 years after I nursed Anthony, I received a shock diagnosis. I hadn’t been at all unwell but during a routine health check with my GP, she had taken a blood sample which was highly abnormal and following a bone marrow biopsy, I was given the diagnosis of acute myeloid leukaemia. It was a bolt out of the blue. I had chemotherapy for three months but the leukaemia returned and I was told that a transplant was my best chance of survival. My brother was tested but he was not a suitable match for me. It was then, in September 2012, that my consultant and his staff at University College Hospital, London, asked the charity Anthony Nolan to search for a suitable donor for me.

‘IT REALLY IS QUITE INCREDIBLE TO THINK THAT ANTHONY NOLAN, THE LITTLE BOY I CARED FOR ALL THOSE YEARS AGO, LEFT BEHIND SUCH AN AMAZING LEGACY – A LEGACY THAT HAS SAVED MY LIFE.’ SARAH COOMER I was very lucky as a match was found very quickly for me. It only took one month. I know some people can wait a long time for a suitable match and others never find one at all. I had my transplant in December 2012. As all information about the donor and recipient is kept confidential for two years, I do not know anything about my donor, except that he is male. You are allowed to communicate anonymously with each other through Anthony Nolan so, after my transplant, I sent my donor a Christmas card to thank him for what he had done. I received a touching reply, in which he said he had not experienced any side effects from making the donation and it was the best thing he has ever done. We are going to stay in touch and I hope to meet him one day. The transplant, and the chance of life it has given me, has had an impact on my entire family. My husband Martyn and my children Andrew, Will and Lucy are all huge supporters of Anthony Nolan now and as a result, have undertaken various fundraising activities for

Sarah during treatment

Sarah at her son’s wedding in 2013 after her transplant

the charity; Will and Lucy ran the London Marathon in 2013, the village where I was a practice nurse held various events including a huge coffee morning, a huge raffle was organised by Will in Sheffield, and my son and daughter-in-law organised a sponsored ‘zumbathon’ in Qatar. Overall, an amazing £21,870 was raised for Anthony Nolan!

footsteps and is going to train to become a paediatric nurse.

Lucy joined the ‘Marrow’ society at Newcastle University, the student group which aims to help people sign up to the Anthony Nolan register. She feels it is important to spend time tackling the myths that exist around joining the register and donating blood stem cells. Will recently completed his training as a doctor and Lucy has decided to follow in my

My eldest son, Andrew, got married in 2013. If it wasn’t for Anthony Nolan finding me a donor, I’m not sure we’d have been able to celebrate that occasion as a family. It really is quite incredible to think that Anthony Nolan, the little boy I cared for all those years ago, left behind such an amazing legacy – a legacy that has saved my life. That I am here to tell my story is a fantastic tribute to the memory of Anthony, to all of Shirley’s hard work to set up the register in memory of her son and to the dedication of everyone at the charity. It seems a most fitting way to mark the charity’s 40th anniversary.’ 159

OUR VISION FOR THE NEXT 40 YEARS Anthony Nolan has achieved an incredible amount over the last 40 years. It has led the way with the world’s first bone marrow register, saliva testing for people joining the register, world-class research into stem cell matching and setting up the UK’s first dedicated cord blood bank. Anthony Nolan’s Chief Executive, Henny Braund, outlines the charity’s vision for the next 40 years.

‘The experience of looking back over Anthony Nolan’s history has been an encouraging one because the story told by that history is one of growth and increasing impact. The story begins with Shirley’s fight to save her son, and widens out to become an ever-growing act of altruism, whose reach is greater now than Shirley could ever have imagined. 160

We have come a long way but there is still so much more to do. That is why our 40th anniversary is both a celebration of our rich history and a great opportunity to look ahead and explore future possibilities. Time passes. What was once considered impossible – unrelated donors, saliva testing –

becomes commonplace. We have big ambitions for the next 40 years as we develop and grow our work in five key areas: • • • • •

SCIENCE & TECHNOLOGY INTERNATIONAL ALTRUISM PARTNERSHIPS SOCIAL IMPACT

‘OUR 40TH ANNIVERSARY IS BOTH A CELEBRATION OF OUR RICH HISTORY AND A GREAT OPPORTUNITY TO LOOK AHEAD AND EXPLORE FUTURE POSSIBILITIES.’ HENNY BRAUND, CHIEF EXECUTIVE

SCIENCE & TECHNOLOGY We are a science-led organisation. The decisions we make – such as changing our joining policy – are based on research and evidence. Over the next 40 years we will grow and adapt alongside scientific breakthroughs – and also hope to make a few more of our own. The potential of stem cells to treat a broad range of diseases is expanding all the time, and it may mean we begin to think more widely about who we are able to help. In short, we will save more lives.

We are passionate about using science to save more lives. Our laboratories handle thousands of samples a year from people who have signed up to our register. Each sample requires tissue typing and we are already using sophisticated robotic technology to streamline this process. We are looking to expand the number of liquid handling robots we use, which will enable us to increase the number of samples we process,

whilst also improving the quality of the sample results. The use of machines will allow laboratory staff to focus on increasingly specialised areas of work. This combination of human and robotic intervention means we can speed up the entire process and help save more lives. Elsewhere in the organisation taking advantage of technological solutions will help us interact with our supporters and provide an increased range of support and advice to patients too.

INTERNATIONAL Shirley Nolan travelled to the UK from Australia to find a cure for her son. Whilst Anthony Nolan has always been a UK charity, we increasingly have an international reach. Working internationally means we can be more patient-focused. Every year we import and export hundreds of units of stem cells to save lives

across the globe. Over the next 40 years we will expand our international reach by taking part in innovative collaborations, such as the T-Control project, which is being undertaken by our team in the Anthony Nolan Research Institute. The project is a consortium between Germany, the Netherlands and the UK and runs from 2013-2016. Its aim is to treat

transplanted patients with a cellular product to fight infection, relapse or Graft Versus Host Disease. As new markets emerge and the world faces an inevitable growth in population, our work will continue to be in demand in every corner of the globe. We need to be agile and wide-reaching enough to go to help where we are needed. 161

ALTRUISM When Shirley Nolan established the charity 40 years ago she was inspired by her son’s desperate need for a donor. But her perseverance and commitment meant that it wasn’t just young Anthony that might benefit – it was many more patients than she ever could have imagined. One woman’s determined act of altruism started it all. Ensuring that altruism becomes part of every child’s DNA

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Altruism remains the catalyst of so much that we do. From stem cell donors to volunteer couriers and beyond. Blood cancer doesn’t discriminate and neither does our register. We are there to find matches for everybody who needs one. Being innovative in our joining criteria enables us to help more of the right donors to help others.

Our pioneering R&Be education programme aims to ensure that altruism becomes part of every child’s DNA. This will allow us to continue to grow our register through the next 40 years. The dedication of the R&Be volunteers means that a whole generation of young people are learning the value of altruism, the importance of science and how altruistic behaviour can enrich society as a whole.

PARTNERSHIPS Partnerships are central to our success. We will continue to value our existing partnerships as well as explore new opportunities, both at home and abroad. By working in partnership we will focus on finding a donor for every patient who needs one and in turn improve the quality of their lives. Our partnerships will be broad and varied and will range from delivering services to patients to working together on pioneering and worldclass research. Working in partnership means we are increasingly accountable – we don’t work alone and it is in everyone’s interest that we succeed. Over the last 40 years we have established many successful partnerships which have enhanced the work of all the organisations involved. The collaboration with NHS Blood & Transplant (NHSBT), which is covered in this book, has led to tangible improvements in the speed at which matches can be found for patients. Our work with ACLT to recruit

people from Black, Asian and Minority Ethnic communities has been vitally important in increasing the diversity of available tissue types on our register. We also collaborate with registries around the world - sharing expertise and best practice to improve the process of matching donors and patients wherever they may be in the world. We learn from them too. In the changing world in which we operate, we expect that collaborations – particularly between the charity and public sectors – will become more and more

the norm. These goals will be met far faster by working in collaboration rather than in isolation. Our priority is that every patient in need of a transplant receives one and through working together we continue to enhance the lives of transplant patients. Establishing meaningful relationships with transplant clinicians means we can start to influence improved patient outcomes through their advancing medical practice. For patients this will mean a more joined-up experience, with the ultimate goal of saving more lives.

Anthony Nolan Chairman, Simon Dyson with ACLT founder, Beverley De-Gale 163

SOCIAL IMPACT Patients like Chris Lewis, who following his transplant set up Chris’s Cancer Community blog – an open blog for people to share their experience of cancer and feel less alone. And Jayne Snell, now one year on from her transplant, and using her public speaking skills to inspire others to reach their potential.

express themselves through singing, dancing and acting. A patient’s journey doesn’t end with their transplant. In many ways it is only just beginning. Not only do we want to cure people of their blood cancer but we want every patient to have the best possible quality of life in the future so that they can live life to the full, improving every day.

Or Harun Galub, whose transplant experience led to him making a career change, training as a paramedic. And Alexandra Heelis, whose post-transplant complications included severe skin GVHD, but is now a ‘master composter’ and runs a programme for the council to teach people about composting. Or Liz Hames, who had a transplant at the age of 11 and now runs a chain of Performing Arts academies to inspire young children to

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Making a difference: Transplant patient Liz Hames with her Performing Arts Academy

‘AS A TRUSTEE I SEE THE EXTREME DEDICATION OF A GROUP OF PEOPLE WORKING TO SAVE THE LIVES OF THOSE WE MAY NEVER MEET.’ BRIAN TURNER CBE, TRUSTEE AND CHEF

WHAT WE STAND FOR We recently took the opportunity to introduce a set of organisational values, summing up our work and approach. These are: Passionate, Patient-Focused, Accountable, Innovative and Improving Every Day. These are the tools we will use to succeed in our ambitions. By focusing on our strengths we will build a sustainable organisation, which can continue to save lives for at least another 40 years. Our new values are one way in which we can articulate what we stand for collectively. Some of them express what we already are, and do, and some of them are aspirational, pointing in the direction we want to head. My hope is that

these values will underpin everything we do; giving focus and meaning to our actions, and encouraging us to be as brilliant as we know we can be. It’s important that we stay curious and don’t settle for anything but the best. Shirley Nolan wasn’t willing to settle. She wanted the absolute best for her son, and for patients like him. She worked long and hard to change perceptions around unrelated donor transplants, and to create an environment in which such transplants could become commonplace. I doubt she knew what the future held any more than any of us can, but she believed passionately that a better future was

possible. And even when she was disappointed and devastated by her own son’s tragic death she continued to hold out hope for all the other lives that might be saved. As we celebrate 40 fantastic years, our work is just as in demand as it ever was. We have come a long way, and there is still so much to do, but the pioneering spirit is something that has always marked this organisation out, and I hope will continue to do so. Here’s to the next 40 years!’

Henny Braund Chief Executive

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THE FUTURE

Professor Charles Craddock, Director of the Bone Marrow Transplant Unit at the Queen Elizabeth Hospital in Birmingham, was appointed as Anthony Nolan’s Medical Director in October 2010. Here, he looks ahead at the medical opportunities which could make a huge difference to people with blood cancer.

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‘The remarkable, and pioneering work of Anthony Nolan has firmly established the potential of unrelated donor transplants to cure patients with blood cancer whose outcome with chemotherapy alone would be dismal. Thanks to Anthony Nolan’s remarkable work – and the development of similar large donor registries and cord blood banks in many other countries across the globe - we are moving towards a position where the great majority of patients who require a transplant will find a suitable donor. However, it remains the fact that, for a significant number of patients, transplants are not curative. Relapse of the original blood cancer and complications of the transplant are still significant causes of death. At the same time late complications of the transplant are increasingly recognised and can have a major impact on quality of life. The challenge for the next 40 years will therefore be to ensure that every patient undergoing a transplant is cured and can live the rest of their life to its maximum potential.

Anthony Nolan has done much in the last 20 years, through the work of its internationally competitive Research Institute, to develop our understanding of how to optimise the matching of donors and patients. As a result, significant progress has been made in identifying the best donor for patients and this has reduced a major transplant complication – graft-versus-host disease (GVHD). However, a lot still needs to be done to develop new transplant strategies which reduce the risk of disease relapse – an area where there has been disappointingly little progress and which remains the major cause of treatment failure. Excitingly, a range of new drugs with the potential to substantially improve the outcome of transplant patients have been developed in recent years. At the same time, Anthony Nolan and other major research groups have identified cellular populations with the potential to reduce both the risk of GVHD and relapse. There is now, therefore, an

‘THE FUTURE HOLDS MANY EXCITING MEDICAL POSSIBILITIES, OFFERING ANTHONY NOLAN A REMARKABLE OPPORTUNITY TO BUILD ON THE SUCCESS OF THE LAST 40 YEARS.’ PROFESSOR CHARLES CRADDOCK

urgent need to assess both the safety and efficacy of these new drugs and cellular products if patients are to benefit from them as rapidly as they deserve. This can only be done through the establishment of a national clinical trials network – an initiative which has strong support from Anthony Nolan and the UK transplant community.

At the same time research has shown that blood stem cells also have the potential to treat degenerative diseases such Alzheimer’s Disease and arthritis. While this is extremely early stage research, it could open up a whole world of new opportunities to treat some of the most difficult and destructive illnesses we currently have no effective means of tackling.

The future holds many exciting medical possibilities, offering Anthony Nolan a remarkable opportunity to build on the success of the last 40 years and continue to offer hope – and cures – to more blood cancer patients and – possibly – even patients with other conditions.’

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LEADERSHIP OVER THE YEARS

Past Trustees Desmond Brady Marshall Chamberlain David Furnell Midland Bank Trust Company Bill Pressey Dr Ann White Garth White Present Trustees Simon Dyson MBE (Chairman) Fran Burke Lionel Cashin Professor John Goldman Peter Harrison Ian Krieger David Noon Dr Colin Rickard Professor Michael Spyer Paul Stanley Karin Swann Brian Turner CBE Chief Executives Desmond Brady Brigadier Anthony Morland MBE Dr Steve McEwan Henny Braund Medical Directors Dr David James Professor John Goldman Professor Charles Craddock

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ACKNOWLEDGEMENTS

We would like to thank everyone who has contributed to this book, including all the individuals and organisations featured, their families, friends and agents. Thank you to all the staff and volunteers at Anthony Nolan, past and present, who have helped with facts, ideas, photos and more. Thanks also to the photographers who have kindly donated their pictures for free. Special thanks to Simon Dyson, our Chairman, for his encyclopaedic knowledge of Anthony Nolan and his extensive archive.

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INDEX Bold page numbers refer to main features

0 41 Club, 50

Braund, Henny, 89, 113, 134, 136, 137, 160-165 British Armed Forces, 60, 66 British Bone Marrow Registry, 148 A A Kiss Through Glass, 22 British Medical Association, 106 ACLT, 110, 163 British Medical Journal, 53 Acute Myelogenous Leukaemia, 104 Brooker, Charlie, 62 Acute Myeloid Leukaemia (AML), 51, 94, 105, Brown MP, Gordon, 125-127 120, 128, 150, 158 Burke, Fran, 68, 69, 70, 71 Adelaide Advertiser, The, 36 Burnett, Katy, 96, 97 Adelaide’s Memorial Hospital, 12, 21 Alice’s Escapes, 137 C Cambridge University, 72 Allen & Overy, 61 Cameron MP, David, 136, 137 Allen, Dougie, 60, 66 Carling, Will, 138 AlloStem, 72, 88 Carson, Frank, 59 Alvarez, Cesar, 74 Cashin, Lionel, 76 Alzheimer’s, 74, 167 Cheltenham Hospital, 83 Anderton, Sophie, 61 Chris’s Cancer Community blog, 164 Anthony Nolan & NHS Stem Cell Registry, 149 Chronic Myeloid Leukaemia (CML), 54, 68, Anthony Nolan Cell Therapy Centre, 114-117 70, 85, 96 Anthony Nolan Friends Group, 51, 52 Church, Charlotte, 58 Anthony Nolan Research Institute, 32, 33, 49, Cirque de Soleil, 76 70, 71, 72, 73, 75, 88, 104, 152, 161, 166 Ciruk, Joanna, 44, 52, 53 Anthony Nolan Round Table Laboratories, Clayson, Naomi, 156 The, 32, 33 Cleaver, Susan, 30 Aplastic Anaemia, 52, 53 Clinical trials, 9, 167 Arewa, Dami, 95 Cohen, Shara, 75 Arguello, Rafael, 73 Cokayne, Heidi, 118, 119 Arthritis, 167 Collins, Pauline, 13, 26-28, 46, 47 Australia House, 23 Colman, Olivia, 122 Coomer, Sarah, 10, 158, 159 B Baldy’s Blog, 124, 125 Corbin, Chris, 85-87 Balls MP, Ed, 125 Cord Blood, 74, 104, 105, 114-121, 148, 149, Barber, Linda, 72 160, 166 Basra, Rik, 150, 151 Cord Blood Bank, 9, 38, 55 Baxter, Jordan, 83, 84 Cord Blood Programme, 89, 117 BBC TV, 140 Couriers, 141-145, 162 Bennett, Bruce 35 Craddock, Charles, 89, 166, 167 Birmingham Women’s Hospital, 117 Blackwell, Deryn, 78, 79 D Daily Mail, 41 Blood (scientific journal), 55 Daisy Ball, 76, 77, 135 Blood Transfusion Service, 29 Daniels, Paul, 58 Boardman, Stan, 58 Davies, Sharron, 83 Bone Marrow Donors Worldwide, 88, 106 Davro, Bobby, 58 Bostic, Simon, 13, 16, 17, 21, 29 De Montford University, 151 Brady, Des, 30, 88 De-Gale, Beverley, 110, 163 Branson, Richard, 82 170

Dennis, Les, 58 Department of Health, 117, 148, 149 Dixon, Sophie, 116 Dodi, Anthony, 72 Donnall Thomas, Edward, 54 Downing Street, 23, 60, 136 Drop the Dead Donkey, 58 Duchess of Kent, 27, 33, 70, 71, 88 Duke of Edinburgh, 25 Dunning, Billy, 61, 62 Dunstan, James, 152 Dyson, Simon, 8, 9, 25, 28, 32, 33, 48, 49, 59, 69-71, 76, 88, 163, 169

East Midlands Development Agency, 115 easyJet, 89, 112, 113 Eggleston, Daniel, 56 Emburey, John, 59 European Federation for Immunogenetics, 89 European Group for Blood and Marrow Transplantation (EBMT), 89 Eurostar, 143 F

Facebook, 36, 39, 40 Fashion with Balls, 61 Fehr, Melissa, 81 Ferguson, Alex, 103 Ferguson, Stuart, 135 Finlayson, Catriona, 115 Fit to Spit, 140 Forbes, Millie, 94 Forsyth, Allen, 51 France, Rob, 81 Fraser, Angus, 59

G Galub, Harun, 164 Garwood, Bethany, 152 GET MEN, 62 GET10, 61, 62 Glasgow University, 94 Goldman, John, 33, 54, 55, 68, 69, 85, 88, 89 Gonzáles Durántez, Miriam, 117 Government’s Regional Growth Fund, 119 Graft Versus Host Disease (GVHD), 72, 161, 164, 166 Great Ormond Street Hospital, 154 Greenwood, Will, 113 Grimes, Norman, 44, 52, 53 Grosvenor House Hotel, 76 Guildhall School of Music and Drama, 20

H Hames, Liz, 164 Hammersmith Hospital, 52-54, 85 Hampton Court Palace Flower Show, 25, 28, 58, 59

Harewood, David, 110, 111 Harlow New Town School, 21 Harvard University, 72 Heathgate. 33, 88 Heelis, Alexandra, 164 Hemesley, Jo, 117 Hill, Richard, 61 Hoddinott, Michael, 149 Hodes, Peter, 144, 145 Hodgkin Lymphoma, 136 Holman, Richard, 35 Honourable Artillery Company, The, 70 Huddersfield Examiner, 124 Human Leukocyte Antigen (HLA), 72, 138 Humble, Professor, 17 Humphries, John, 31 Hurricane Andrea, 145

IBM, 68 Imperial Cancer Research Fund, 72 Imperial College London, 72 Ivy, The, 85

J Jack Petchey Foundation, 62

James Tudor Foundation, 115 James, David, 21, 24, 27, 29-31, 47, 53, 54, 88 Jawahar, Kaanthan, 109, 140 Jenner Institute, 72 Jessen, Christian, 146 Johnson, Alan, 116, 125 Joining Policy, 152, 153, 161 Jones, Brad, 61, 135

K Karen Morris Memorial Trust, 93

Kensit, Patsy, 98 Kent University, 96, 97 Kent-Bramer, James, 128, 129 Kentish Express, 22, 37 Kidd, Jodie, 61 King, Jeremy, 85 King’s College Hospital London, 104, 109, 117 Kustow, James, 90-93

L Lancaster University, 95 Lawrence, Dani, 61 Lee-Potter, Lynda, 37, 41 Leicester General Hospital, 117 Leicester Royal Infirmary, 117 Leicestershire Police, 150 Leon, 103 Leukaemia, 30, 32, 54, 61, 76, 81-83, 85, 90, 91, 93, 97, 102, 120, 124, 128, 150 Lewis, Chris, 164 Lewis, Lennox, 70 Lewis, Orin, 110 171

Little, Ann-Margaret, 72 London Marathon, 80-84, 89, 159 London Palladium, 58 Lumley, Joanna, 23, 34, 35, 56, 59

M M People, 76 Madrigal, Alejandro, 33, 72, 73, 75, 88, 89, 114 Man on a Mission, 62, 63 Manchester Royal Infirmary, 144 Manchester United, 103 Margate Hospital, 47 Marrow (the student group), 90-95, 96, 97, 159 Marsh, Steven, 72, 89 Mason, Sorrel, 105 Matthews, Marion, 23, 27 McEwan, Steve, 89, 114-116 McDonald Wood, Calum, 93 McFarlane, Joan, 16 McWhinnie, Alasdair, 75 Memorial Sloan Kettering Cancer Center, 75 Metropolitan Police, 24, 60 Miliband MP, Ed, 136 Milton MP, Anne, 117, 148 Mitchell, Katie, 95 Morland, Anthony, 25, 32, 33, 59, 70, 88 Morris, Karen, 90-93 Moxey, John, 32, 33 Multiple Sclerosis, 74

N National Marrow Donor Program, 142 NatWest Bank, 49 Newcastle University, 159 NHS Blood and Transplant (NHSBT), 126, 148, 149, 163 Nobel Prize, 54 Nolan, Anthony (the boy), 8, 10, 12-15, 16-18, 21-29, 34-37, 41, 46, 47, 51, 76, 78, 79, 88, 134, 155, 158, 162 Nolan, Shirley, 8, 9, 12-19, 20-25, 26-29, 31, 34, 36, 37, 41, 46, 51, 52, 58, 59, 76-79, 88, 106, 112, 155, 158, 160-162, 165 Nolan, Ted, 12-14, 21 North, Stewart, 85-87 Norwen and Holst, 49 Notting Hill Carnival, 110 Nottingham University, 90

O O’Leary, Ann, 153 172

Oakley, Laura Jane, 108 Olympic Torch, 83, 84 Orchard, Lauren, 100 Orme, Thomas, 152 Osmonds, The, 76

Pabani, Rubi, 117 Parkinson’s Disease, 24, 25 Pentagon, 142 Perez-Cruz, Isabel, 75 Peripheral Blood Stem Cell (PBSC), 88, 94, 106-109 Pfizer, 112 PhD Programme, 72-75 Philips, Zara, 61 Plumpton, John, 35 Pollard, Audrey, 102 Pontefract Girls’ High School, 21 Pride of Britain, 137 Prince Edward, 151 Pyne, Alice, 132, 136

Q Queen Elizabeth Hospital, 166

Queen Elizabeth II, 25, 59 Querol, Sergio, 115 Quirke, Pauline, 78, 79

R Ramprakash, Mark, 59, 61 Ratcliffe, Susan, 103 Red Star Parcels, 49 Register & Be a Lifesaver (R&Be), 89, 124- 127, 153, 162 Rhoda (Shirley Nolan’s mother), 14, 22 Rik Basra Leukaemia Campaign, 151 Robson, Linda, 37, 78, 79 Round Table, 24, 25, 27, 31, 33, 35, 46-51, 70, 71, 86, 88, 112 Royal College of Physicians, The, 55 Royal Free Hospital, 32, 33, 49, 72, 86, 88, 117 Royal Horticultural Society, 59 Ruddy, Kim, 155 Ruddy, Lucas, 154, 155

S Saliva/Spit Testing, 9, 38, 89, 138-140, 151, 152, 160 Saudemont, Aurore, 72 Scott, Derek, 120, 121 Shaw, Bronwen, 72 Shepherd, Scott, 94 Simpson, Paulette, 119 Singh Kohli, Hardeep, 62, 63 Single UK-wide Registry, 89, 148, 149 Small, Heather, 76 Snell, Jayne, 164 Snow, Jon, 18 Solomon, Martin, 111 Spence, Lynne, 82 Squire’s, 59 St Martin-in-the-Fields, 41 St Mary Abbots Hospital, 30-32, 49, 88

Stanford University, USA, 72 Stem Cell Strategic Forum Report, 148 Stone, Paul, 76 Strauss, Andrew, 61 Stroke, 74 Sudbury, Adrian, 124-127 Sudbury, Keith, 127 Sue Harris Cord Blood Collection Centre, 117 Sue Harris Trust, 117 Sunningdale Golf Club, 58, 59 Swann, Karin, 113

T T-Control project, 161

Take That, 136 Text Santa, 39, 111 Thomas, Malcolm, 31 Trent Park College, 20 Turner, Brian, 165 Twitter, 36, 39, 40, 62, 78, 136, 143

U Underwood, Rory, 138 University College Hospital London, 158 University College London, 72 Unrelated Donor, 16, 21, 29, 53, 54, 106, 150, 166 US Postal Service, 102

V Van Rood, Jon, 54 Virgin Group, 82

Volcanic Ash, 143, 145

W Walsh, Bradley, 58 Watson, Russell, 76 Welsh Blood Service, 148 Welsh Bone Marrow Donor Registry, 148 Westminster Hospital, 13, 14, 16, 21, 27, 29, 30, 36, 46, 47, 88, 158 White, Ann, 30 Whitlam, Gough, 23 Wilkinson, 89, 113 Wiskott-Aldrich syndrome, 12, 21, 88, 154 Woodcock MP, John, 136 Woolworths, 49, 112 World Health Organisation, 72, 92 World Marrow Donor Association (WMDA), 54, 55 World Trade Centre attack, 142 Worrall, Mark, 102

Y Young, Stephen, 128, 129

YouTube, 62

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ANTHONY NOLAN 2 Heathgate Place 75-87 Agincourt Road London NW3 2NU 0303 303 0303 www.anthonynolan.org Registered charity number 803716/SC038827