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The Brittle Bone Society
Newsletter
Supporting people who live with bones that break
Issue No. 107 – Winter 2014
BBS Support Group Parties 2013 OLIVER AND OLIVIA pack their OI passports and travel to meet their new Volunteer group coordinators.
MEMBERSHIP D
RIVE If all members encouraged 3 people to su by donating £10pport us a that would tota year £25,000 per yea l r.
VOLUNTEER SUPPORT GROUPS NORTH MEETS SOUTH ATHLONE Christmas FUN PERTH
Trustees were delighted that Northern Ireland group coordinator Vincent Hunter organised a strong contingent to travel to meet with Helen Lehane’s Republic of Ireland group for a joint Xmas bash. Patricia travelled over from HQ and delighted in the outstanding Irish hospitality. Current members and supporters and brand new families joined in the fun and the day was a well organised success for coordinator and chief organiser Helen.
London Bash 40 members attended the London event which was held at the Park Inn Hotel near Heathrow.
Members descended on the Station Hotel in Perth in December for a great afternoon of BBS updates. The BBS Conference film was premiered to a warm reception, giving members a chance to catch the highlights of attending our annual charity event.
It was great to see both old and new faces, and to hook up with members in Athlone, Ireland, via Skype who were also holding lunch on the same day. We had filmmaker Ben Wiles join us with his colleague and camera to capture more case studies for our new website and we will have clips of this available soon.
Oliver and Olivia ‘the educational movie’ graced the red carpet at all of our BBS Xmas parties across the country. Our educational teddies aimed at primary school children have been endorsed and approved by our POINT team and local schools. The film is narrated by the very talented Miss Kerry Ingram, and the teddy bears were presented to the area coordinators and for others to get behind and help us spread awareness of OI. All the BBS Christmas events saw new friendships forged and old acquaintances renewed. Santa as ever was a smash hit with party goers and a kind donation from the Grant family went towards the children receiving a present at each of the BBS parties.
Christmas cheer in Chester Christmas Lunch in Chester was held at the Queens Hotel and attended by 35 delegates. The children all enjoyed playing with Oliver and Olivia Isaac, and of course meeting Santa. Diane Crookham-Burke our Area Coordinator for the North West was presented with Oliver Bear. The Conference 2013 film went down a treat as quite a few of the ‘stars’ captured in the movie were at this event.
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BBS Bristol bound VOICE 2014
We are pleased to announce VOICE 2014 and we are asking our OI delegates aged 16-30 to join us for an interesting and fun-filled event at Novotel Bristol Centre from Friday 11th - Sunday 13th April. Don’t forget to look out for our hoodie design competition - see back page!
Registration forms are available online at www.brittlebone.org
Commonwealth Games Can Collector Appeal Commonwealth Games Alert! Enthusiastic volunteers needed!
We’re applying for can collections at the Commonwealth Games in Scotland this summer and will need lots of collectors - dates are 18th July till 3rd August.
This is a great chance to be part of the Commonwealth Games, to raise awareness of the BBS to visitors from all around the world and to raise vital funds.
We hope to be stationed at famous sporting venues such as the Sir Chris Hoy Velodrome, the Commonwealth Swimming Pool, Ibrox Stadium and Barry Buddon Shooting Centre.
Please email chris@brittlebone.org ASAP if you can help. And please ask your friends, family, neighbours and colleagues to join in the fun.
CEO update
Eurordis / Rare Connect / Orphanet Keeping busy at HQ It’s been a busy year for staff planning and handling more events and volunteer group meetings, VOICE, Cool Bones, main Conference and more. Back office are benefitting from the new database system but we do need members to provide us with their email addresses. Please send your current email address to bbs@brittlebone.org so we can roll out our new E-Zine newsletter and save the BBS costs.
With ever expanding forums being developed and improved, and new ways becoming available to connect, it means we have to be aware of areas of vast information opening up and we need to decide which ones we follow and support. It can be overwhelming but – we need to do our utmost to stay up to date and relevant for our membership. The BBS is doing its best to develop its relationships with all the groups we should be involved with and our new website will have links to all the growing access points endorsed by our trustees and our medical advisory board, so that BBS members can keep on top of our work and get involved.
We are currently launching our new Supporters package, which is very important, and we hope you will get behind this. Also we keenly await the launch of our new website in the near future. With sincere thanks to Trustee Andy Mills and to Christopher Lynch for their time, effort, skill and expertise.
CONFERENCE 2013 Conference 2013 was yet another success, Robert Gordon Treasurer was re-appointed and thanks were given to James Sageman and Mark Ross Trustees who both stood down on completion of their three year term.
CONFERENCE For 2014, I am delighted to confirm that chairman of our MAB Prof Nick Bishop will attend conference. Full updates on speakers will be posted online soon and registration information is in this edition.
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AWARDS - BBS EXCELLENCE Awards at our events are just so much fun. Last year, somebody said ‘Patricia it’s just like being at the Brit Awards’. Praise indeed – so if there is someone out there you think we should honour, then please let me know.
Patricia
NOTE FROM YOUR CHAIRMAN
I hope you all had a lovely festive break, and I’m sure you will agree, it’s been another milestone year for the BBS.
STAFF & MOVIES Patricia and BBS staff presented another very successful 2013 conference in the East Midlands and feedback has been great. I urge you to watch our amazing film (screened at our recent Xmas parties); it will be posted on our new website going live soon. We also commissioned filming at our recent Xmas parties and our new website will have lots of interesting information and help for the OI community.
COOL BONES Cool Bones launched last year and is set to be a sizzler in 2014, with thanks for support from SANOFI wining our silver bursary award and gaining more funding from the BBC Children in Need.
KEEPING IN TOUCH Our BBS E-Zine will start rolling out this year (but we need your email addresses PLEASE) and our website forum for Cool Bones Kids is on track.
SUPPORTING YOU Providing support and practical help to our members throughout 2013 continued to be our main driving force. My thanks to our staff who produce the results each year. An outstanding year for fundraising and with the soon to be launched website and fundraising pack – I hope even more of you will get involved in the months ahead. Thank you to each and every one of you, for all that you do – we are so much stronger thanks to your contributions which never cease to humble me, my fellow trustees and our staff at HQ. I am thrilled at the rapid growth of our Support Groups which have been growing in size with new coordinators stepping forward to champion our work.
TRUSTEE SUPPORT My gratitude as ever to the entire trustee board and in particular again to Secretary John Phillips who last year helped by providing ever increased access to incredibly talented lawyers to work with us, offering invaluable pro bono assistance in an amazing array of areas. We are launching our new charity supporter’s package in this issue and we appeal for you to sign up, show your support and get behind your Charity in 2014.
Trustee Andy Mills has worked extensively with Northern Ireland member Christopher Lynch to produce our new website and Cool Bones forum. Christopher is also providing design expertise and my sincere thanks for that.
RESEARCH Last year saw us become even more involved in healthcare research – supporting our NHS practitioners. With my thanks to BBS members who have readily offered their time, knowledge and input to all the projects and a full update is in this issue and will be on our website.
CAMPAIGNS Please don’t forget to support our Oliver and Olivia teddy bear campaign – speak to your local school, ask if they would like a short presentation and let’s get ready for Wishbone Day and help us reach as many schools as possible spreading awareness about OI. I know we have some great campaigns lined up for this year – calling for a fair chance in sport, hotels to review their accessibility criteria and appealing to councils everywhere to ensure their pavements and roads are safe for wheelchair users. We saw a number of families affected by dreadful accidents and our best wishes to all concerned – that they recover as soon as they can. The new website will provide links to topical updates and campaign items and I urge you to get involved if you can.
COLLABORATION, PARLIAMENT Patricia has been busy building and strengthening our network of contacts with other similar organisations and been determined in making sure we contribute to as many relevant consultations for the BBS as possible last year, on various critical policy documents. These included the UK Rare Disease Plan. In 2014 we hope to collaborate more with other similar rare condition groups, as together our voice will be stronger, calling for improved services, care and treatment. We are now members of the Specialised Healthcare Alliance at Westminster - House of Lords – an important committee to ensure the patient’s voice is heard when commissioning of services is being discussed. I am proud of our involvement with the Disability Action Alliance and the recent feature in the ASPIRE2 magazine http://odi.dwp. gov.uk/ – featuring Tori Siegler and Claudette Day – a great article focussing on our work and the lives of the girls. See page 17 for further details. We continue to work at Scottish Parliament on the rare disease group and fully intend to spread our involvement in Republic of Ireland, Northern Ireland and Wales this year. I travelled to Stormont’s Northern Ireland Assembly with Patricia and a medical delegation including Dr Arundel and Ms Duffy from Musgrave Park Hospital, Belfast and asked that those in Northern Ireland be given the same opportunities to benefit from services as we do elsewhere in the UK. I hope you have a lovely spring time when it comes, and see you all at Conference in London August 22nd – Book your places soon as demand is set to be high!
Elaine Healey 3
BBS CAMPAIGNS 2014 BBS hope to enlist ‘big’ names to front their campaigns. . .
Laura Swims for Scotland & BBS call for Review to CLASSIFICATIONS 25th January 2014, Laura Pilkington from Scotland did her first 400m freestyle and needed to get under 8mins 30 seconds to qualify for the Scottish Gas National Open Championship being held at the beginning of April this year. Laura did it in 8mins 6 seconds! Laura also managed to qualify her 100m backstroke for that event. The Scottish Gas National Open Swimming Championships are the qualifying competition for the Commonwealth Games (Glasgow 2014) though Laura can’t get near the times needed for that (due to her current classification) which is precisely why we need your help! We are calling for the Classifications Board to look at the parameters of awarding ‘classification’ which can make a huge difference to athletes competing who have OI. Its clear that Laura’s family and the BBS community think it is fantastic for her to have achieved so much and to get to this major event where all the top swimmers will be competing and to have done so well – but we want to support her to do even better! Laura’s next swimming trip down south will be in March when she is competing for the Scottish team again in the DSE Junior & Youth Swimming Championships.
Equal playing ground for OI in Sport BBS are keen to get members signing up to a number of causes in the coming months. We want you to get behind an appeal to the national classification swimming board about reviewing the rules as they presently apply to people with OI. Look out online for our campaign and sign up to support a review.
HISTORY BONES 2014 As staff at the University of Dundee Archive Services work through the Brittle Bone Society’s archival material it’s becoming very clear how the Society has made good use of the media in its appeals and publicity campaigns.
Relationship expert and supporter of the BBS Tracey Cox took part in TV game show the Chase which we think will be screened around August this year. We were thrilled she would be playing to support the work of the BBS. Our youth delegates will know Tracey will be attending our VOICE event to be held this year in Bristol on the 11th April at the Novotel Hotel. Minister for Sport & Commonwealth Games Ms Shona Robison MSP attends launch of History Bones in 2010, with Margaret and Yvonne Grant looking on, and Caroline Brown, senior archivist managing the project, joined on the day by various local dignatories.
As well as the usual promotional material such as plastic bags, badges, stress balls, stickers and posters the archive contains lots of film and sound material relating to campaigns. From regional TV programmes including Look North, to This Morning, Tomorrow’s World and GMTV, the archive contains video and film material about the Society’s activities as well as information about major campaigns such as the Radio 4 and Children in Need appeals. If anyone has any similar material that they would like to donate to the archives we would be happy to accept it. As previous newsletters have indicated there are some gaps in the archives. At present we are particularly keen to receive material relating to Society conferences pre 1997. If you have anything or if you would like to learn more about the archive please contact archives@dundee.ac.uk.
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Tracey Cox plays the Chase on TV for BBS
We will post more information on the date for screening – watch our website.
BBS POLICY COMMENT UPDATE BBS JOINS SPECIALISED HEALTHCARE ALLIANCE http://www.shca.info
We joined the Specialised Healthcare Alliance committee that focuses on work for rare conditions and various outcomes within the health service; latterly we have focussed on the upshot of the Rare Disease UK Plan and the 51 recommendations. BBS offered their contribution to this paper, there are extremely important issues facing the NHS and specialised commissioning and this charity is involved on your behalf. They have a useful website reporting on the latest on funding for specialised services, reports of meetings with NHS England, the latest on the UK Strategy for Rare Diseases and implementation and updates on the five year strategy for specialised services. A core element of the Alliance’s work in 2014 is a commitment to increased parliamentary engagement. A significant part of this will be a parliamentary event planned for late spring which will mark the growth of the Alliance to 100 patient-related members and raise awareness of specialised services among parliamentarians. The BBS will be involved in supporting this and hope to enlist Prof Bishop to join us when the date is agreed. The objectives of the event would be to: · I mprove parliamentary understanding of specialised services through the testimony of clinicians and patients. · Secure local media coverage on the event and specialised services. · R aise awareness of the Alliance and members’ aspirations for improved specialised services, including any concerns relating to the draft 5 year strategy.
Specialised Healthcare Alliance FOR EVERYONE WITH RARE AND COMPLEX CONDITIONS
‘MOVING MORE, LIVING MORE’ THE PHYSICAL ACTIVITY OLYMPIC AND PARALYMPIC LEGACY FOR THE NATION As members of the DAA we have been asked to tell you about the Moving More Living More campaign which was launched on the 13th February. It includes details of how to have your say on the Public Health England consultation on encouraging people to become more active. Government and other organisations, including local authorities, employers, the NHS, and private and third sector groups, have already put in place a wide range of measures to help people become more active. That is why we are asking you to tell us about your ideas, both projects that are already happening and suggestions for what more could be done, including where projects might be scaled up and replicated across the country. To find out more about this please see: www.gov.uk/government/publications/moving-more-living-moreolympic-and-paralympic-games-legacy
Medicines & Policy at Scottish Parliament… CPG on Rare Disease Patricia and Rebecca attended the Cross-party Group group on Rare Disease. The agenda focussed on the Rare Disease UK Plan and 51 commitments produced from that. Another key topic was the issues related to securing access to currently unlicensed medicines – the process of which was explained by Professor Angela Timoney of Scottish Medicines Consortium. Since then we have responded with our extensive replies to the comments paper. If you would like a copy of our response contact Rebecca@brittlebone.org. We also took part in an online Q & A with Cabinet Secretary for Health and Wellbeing Mr Alex Neil MSP - 126 questions in Scotland were put forward and then 15 selected and one was from the BBS. Patricia Osborne from Dundee, on behalf of the Brittle Bone Society Charity, asked “over the next ten years, how will the Scottish Government monitor improvement in the care of children and adults with rare diseases/conditions in Scotland; how will they implement adequate transitional services and further improve current access to complex wheelchairs (reviewing the Quality Framework). And, finally, what measures are being taken to use patients’ input of lived experiences to assist in the training, practices and supervision across the full spectrum of NHS healthcare professionals, in relation to multidisciplinary care for those with rare and long term conditions?” https://www.scottish.parliament.uk/S4_ HealthandSportCommittee/Inquiries/Ask_Health_Secretary_-_ Questions.pdf
RARE DISEASE DAY 28TH FEBRUARY
A combined group of volunteer group reps from Republic of Ireland and Northern Ireland will represent the BBS on Rare Disease Day at the RDUK Rare Disease Day event 28th February at Riddell Hall Belfast. Welsh Assembly Cardiff will be attended by Kat Watkins. Scottish Parliament 25th February will have BBS Support Worker Rebecca Bramhall and a member from Scotland. Let us know what you are doing to mark the date. Send us your pics for our new website to bbs@brittlebone.org
2014 BBS CAMPAIGNS After a number of recent accidents on Britain’s roads and pavements we feel it’s time to mount our own campaign.
Please get in touch at www.brittlebone.org and help us highlight that not just cars get damaged by potholes. But more importantly people do! 5
Volunteer Support Groups Training news Between the groups there have been 17 meetings held in total which is a great achievement for the first year.
2013 saw the launch of our Support Groups, with the first of the training sessions being held in November 2012. Since then there have been 4 training sessions, and we have launched 6 Support Groups with another 2 planned for early this year.
We would like to extend our thanks to all our Support Group Coordinators for all their hard work and effort in making these groups a success. Coreen Kelday
We look forward to seeing what 2014 has to hold.
BBS VOLUNTEER SUPPORT GROUP UPDATES Wales
Republic of Ireland
Support group coordinator Kat Watkins will attend the Welsh Assembly for this year’s Rare Disease Day conference. Kat attended the Christmas Lunch event in London and received her Olivia Isaac Bear to take back to Wales.
In the coming months Helen is hoping to have at least two meetings, one in Cork and one in Dublin. The first meeting is provisionally planned for March. Kat Watkins
Kat is very much looking forward to taking Olivia around the schools and introducing her to school children in Wales.
Scotland Scotland started 2013 by launching the Support Group with a Burns Lunch being held in January and then a visit to the Basketball Match in March. Marcus and Karen are planning on holding an event for Wishbone Day and welcome any suggestions.
Marcus & Karen Donald
Northern Ireland Northern Ireland support group will be meeting in February to discuss the rare disease conference in Belfast and plan events for the coming year; to include the ‘unbreakable spirit ball’ in May Vincent Hunter which is being managed by Lesley-Anne Starrett. Members will also be making plans to attend conference, discussing fundraising and planning numerous sociable events. Vincent will also give feedback following on from the Stormont visit.
At these meetings members will come up with some fundraising ideas for Wishbone Day on May 6th.
Helen Lehane
After discussions with Patricia, Ireland are now in the process of forming an Irish forum see CEO report for more info. Helen acknowledges everyone who helped with events in 2013 and was delighted with the results of the Christmas lunch and wishes to extend a big thanks to all who travelled to Athlone and helped make it a success. Helen said hopefully more cross border events will be organised in the future. Helen plans to attend the Rare Disease day conference on the 28th February 2014 in Belfast. She will be also be travelling to local schools this year with Oliver to show the BBS short film and talk to children about OI. Anyone who is interested in inviting Oliver or Olivia to visit their child’s school can find request forms on the Brittle Bone Society page: www.brittlebone.org
Birmingham Maureen is planning meetings for the 1st of March and the 3rd of April. Rebecca will be in Birmingham in April and is looking forward to meeting any members who will be at this meeting.
Maureen Groom
If you require any information on either of these meetings please contact Coreen at coreen@brittlebone.org
new recruits!
A training session was held at BBS Headquarters in November, and we are pleased to announce our latest area coordinator recruits are Angela Stewart and Lisa Hedley for Newcastle and the North East, and Sharon Fox for Sheffield. Anyone wishing to get involved, or who would like to help with the setting up of these groups, please get in touch with Coreen for further information coreen@brittlebone.org.
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Angie & Lisa
Sports Corner
Jordanne Whiley SUPER Series Doubles Tennis Win
PODIUM HOPES Adam Simmons
Jordanne Whiley had an impressive year in 2013 winning numerous singles and doubles events with the addition of two Super Series events in doubles.
Another young BBS member, Adam Simmons, has secured his place as ‘Podium Potential’ in the 200m sprint Kayak Paralympic event at the Rio 2016 Games.
Wimbledon saw Jordanne become runner up for the second year in a row. 2014 also has her off to a great start by reaching the first Super Series women’s doubles final at the Sydney International Open. In January Jordanne became the first British woman to win a Grand Slam wheelchair tennis title along with partner, Yui Kamiji of Japan with a 6-2, 6-7(3), 6-2 victory over Dutch second seeds at the Australian Open in Melbourne. BBS staff have secured Jordanne to attend our VOICE event.
He has received sponsorship from EOS Communications and is in full time training at the National Water Sports Centre in Nottinghamshire.
Life with the Circus Continues…
InstructAbility Graduates get to work!
Penny Clapcott Post being a professional cast member of the Paralympic Opening Ceremony 2012 as an aerial circus performer I wasn’t sure how I was going to top that experience. However late in 2013 once a few fractures had healed from separate incidents (so far I haven’t broken doing circus, it’s still those silly incidents that have caused my fractures) I was offered a place to train on an international circus track programme in Los Angeles.
I jumped at the chance and flew out there for 2 months. The training was immense, being taught by Cirque Du Soleil coaches was a once in a life time opportunity for me and I learnt so much. I still can’t quite believe I can say I’ve been in a sell-out circus show in Los Angeles and worked with an incredibly talented cast. We were also very privileged to be wearing and using Cher’s costumes/equipment from her ‘Believe’ tour. I am hoping to go back out there later on this year but it depends if the show gets another run but not only do I miss the training but I miss the weather. The sunshine definitely helped my bones behave and didn’t feel as achy. In the meantime I’m performing at the Heritage Flame Celebration ‘Spirit in Motion’ on Sunday 2nd March 2014 in Aylesbury so that is something to look forward to.
We all know how important it is to keep active in order to maintain health, and this time of year sees many of us signing up for a gym – although that initial impulse doesn’t always translate into regular attendance... For wheelchair users, it’s just as important to maintain a healthy active lifestyle – but not always easy to know how. So having guidance from a qualified gym instructor, who is also in a chair, is a bonus. A pilot scheme at Wheel Power sees Physical Activity Advisors taking up positions at the Duke of Cornwall Spinal Treatment Centre in Salisbury and The London Spinal Injuries Centre in Stanmore, helping people with a recent spinal injury to discover the ways in which they can increase their fitness and strength. Mark O’Neill (Stanmore) and Ross Morrison (Salisbury) qualified as gym instructors through the InstructAbility programme, delivered by Aspire and YMCA fit to engage more disabled people in the fitness industry. Brittle Bone Society have been in touch and hope to meet qualified staff at the London Spinal Cord injury centre in Stanmore so we can arrange a demonstration at our next conference.
http://www.aspire.org.uk/11instructability.aspx 7
Thanks to Our Fundraisers Marathon Runners Appeal
Extreme Challenges
London Marathon 2014 - 13th April 2014
Paul Deadman
We have a team of three enthusiastic runners for this year’s Virgin London Marathon. Duncan Sykes http://uk.virginmoneygiving.com, whose daughter has OI and who ran in the BBS London Marathon team in 2012, enjoyed it so much he is doing it again!
Paul Sanderson, whose partner’s grandson Henry has OI, is to be part of the BBS team for the first time and is really looking forward to taking part http://www.justgiving.com/paulsanderson21. Garry Dobson is delighted to be part of the BBS Team. We already have places for the Virgin London Marathon in April 2015 – please contact Christine for more details.
British 10k London Run
Paul’s 2013 challenge was to climb to the top of MountToubkal in North Africa. This was a really extreme challenge for Paul who has chronic sciatica and as a lifelong smoker knew he was going to find the high altitude really tough. Well done and huge thanks to Paul for completing the climb and raising £1777.79.
John O’Groats to Land’s End David Barker raised £716.62 by completing this gruelling cycle trip the length of the UK.
And Land’s End to John O’Groats Lol Bishop did the LeJog cycle and raised £175.
Lynmouth and Watersmeet Walk
July 2013 In July 2013 the BBS had a team of 15 runners who ran through the centre of London – along part of the London Olympic Marathon route – on one of the hottest days of the summer and raised £2100 altogether.
11 year old Florian raised £419.37 when he walked 8.8 k.
London to Brighton cycle
July 2014
Joe Knight had raised £700 when he completed this demanding cycle.
We hope to have a team of 18 runners and still have 6 places. If you’re interested in being part of the BBS team for this exciting race, described as “the world’s greatest road race” please contact Chris@brittlebone.org.
James’ Four Peaks in a week In one week in January this year James McKnight climbed the highest mountains in England, Ireland, Wales and Scotland for the Brittle Bone Society and raised £389. He climbed; 1. Scafell Pike (England) 978 m/3,209 ft 2. Carrán Tuathail (Ireland) 1,040 m/3,412 ft 3. Snowdon (Wales) 1,085 m/3,560 ft 4. Ben Nevis (Scotland) 1,344 m/4,409 ft This was a significant challenge, involving over 14,000 feet of ascent, over 50 km of walking, as well as tackling the severe winter weather and all against the clock with the short winter days! Well done and thank you to James.
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Thanks to Our Fundraisers BBS CHALLENGES PLANNED 2014 Alan Ford
is tackling three Yorkshire Peaks in April.
What your Money Bought in 2013
Sharon Proctor
is walking the West Highland Way in April.
We would like to take this opportunity to thank all the Trusts and Organisations that support our many funding applications for specialised equipment.
Louise Alway
This month we wanted to feature two items that have made a lasting impact to some of our younger member’s lives.
is doing a Skydive in April.
Rob Cutts
is doing a 160ft Bungee jump from Salford Quays, Manchester in May.
Derek Ingram and Thames Valley Police Motorcycle Club are planning a cycle across the UK visiting each Police HQ (43 of them!) en route to the BBS HQ in the summer.
Mia Basford (right) and Holly Girven (left) recently received new manual wheelchairs. Lynne, Holly’s mum, said “Thank you so much. She is thrilled with it and is practising getting it in and out of the car. She will soon have it sorted and she is so excited about the independence it will give her.”
Luke Sharp and Peggy Golden
are walking the length of Hadrian’s Wall in August.
David Shardow
is cycling from Berlin to Gothenberg in September.
Steve Rayner
is running from Dublin to Sheffield in October.
Rob Ellis
is doing “3 in 3” – three half marathons in 3 months, from September to October.
Paul Deadman
is trekking across the Sahara in November.
Fundraising Locally Golf captaincy
Wirral 10k
Jill Rose and her fellow members of Ringway Golf Club raised £4274 from competitions and events.
Well done to Abbi Evans and Sophia Withers who ran the Wirral 10k in October and between them raised £686.
Golfers from the Iver Golf Players have raised £2091 during June Clarke’s captaincy.
Chris Batterby Chris has raised an amazing £3750 since September 2013 by holding very successful events including a Clay Pigeon Shoot which raised £970, an October Pub Music night which raised £1040 and a Boxing Day Charity Auction which raised £1370.
Perkins Great Eastern Race Roxanne Bonin raised £769.83 when she ran this half marathon in October.
Cheltenham Half marathon Les Hampton raced around this course in his wheelchair to raise £556.
In short…… Mike Leeson completed the Tough Mudder and raised £190; Maria Catney and Matthew Kelly both made donations totalling £350 instead of buying favours for each of their weddings; Dan and Marie Andrews raised £182 at a Water Festival; David Shardlow cycled from London to Brussels and raised £150; Mark Saunders raised £145 when he swam Lake Windermere….
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NHS Centres of Highly Specialised Services – Sheffield Children’s Hospital We currently have around 400 children with OI treated in Sheffield including about 100 children with severe complex and atypical OI, some from Southern Ireland, with 40 reviewed in other centres where we do outreach clinics (Belfast, Leeds, Liverpool, Manchester, Middlesbrough and Newcastle).
Professor Nick Bishop
We undertake 3 or 4 metabolic bone clinics each week and 12 outreach clinics a year. We hold transition clinics with Dr Jennie Walsh from the adult metabolic bone service in Sheffield; she now looks after about 40 young adults with OI, many of whom started their treatment at the Children’s Hospital. See pictured below, some of the team based at Sheffield . . . . from the list opposite.
The Clinical Service The OI service at Sheffield Children’s Hospital started in 1998. It’s a comprehensive multidisciplinary service combining medical, nursing, therapy, orthopaedic, neurosurgical, dental and dietetic input (see panel for who’s who). We host the genetics laboratory that undertakes molecular testing for OI, looking at all the relevant genes where changes are known to cause OI and bone fragility.
Combined Bone Staff Team Heather Allen Dietician Paul Arundel Consultant in Paediatric Bone Disease Meena Balasubramanian Consultant Clinical Geneticist Jill Birch Occupational Therapist Nick Bishop Professor of Paediatric Bone Disease Lee Breakwell Consultant Spine Surgeon Ashley Cole Consultant Spine Surgeon Ann Dalton Head of Molecular Diagnostics Service James Fernandez Consultant Orthopaedic Surgeon Davina Ford Physiotherapist Steve Giles Consultant Orthopaedic Surgeon Gemma Greenacre Clinical Nurse Specialist Claire Hill Physiotherapist Liz Knowles Occupational Therapist Liz Lee Clinical Nurse Specialist Caroline Marr Physiotherapist Amaka Offiah Consultant Skeletal Dysplasia Radiologist Katie Parsons Therapy assistant, admin support Carolyn Platt Admin support, national service Rebecca Pollitt OI Molecular Diagnostics Lead Ali Seasman Occupational Therapist Saurab Sinha Consultant Neurosurgeon Elaine Walker Clinical Nurse Specialist Yvette Walker OI Nurse Jennie Walsh Consultant for young adults with metabolic bone disease Helen Webb Secretary
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National and international work We (with Glasgow and Birmingham) are working on creating a European network to improve the diagnosis and treatment of early onset bone fragility, a lot of which is caused by OI. We also keep in contact with OIF in the USA and other metabolic bone centres in North America, particularly Montreal and St Louis.
Claire Hill
Davina Ford and Jill Birch
Dr Paul Arundel
Elaine Walker
What do we do?
Research and Innovation
Nursing
We do research into
The clinical nurse specialists work closely with and coordinate the activity of all professionals within the metabolic bone team. They are a key point of contact for other specialities, patients and their families, providing reassurance, education and support.
Therapy Our therapists work closely with our colleagues, patients and families to provide advice and support to enable children and young adults with OI to be as independent as possible. This is accomplished by specialist assessment and treatment provided in clinics, outpatient appointments, community visits and intensive therapy weeks. Our intensive therapy weeks which are accessible to all severe, complex and atypical OI patients under our care are highly successful, with patients and families stating that the experiences are life changing.
2. Q uality of life and functional outcome and there is a project going on led by Claire Hill developing a new assessment tool with help from across the country that is nearing completion 3. Innovation work around microwalkers and micro potties 4. H ow best to distinguish OI from other conditions that look like OI (but aren’t) early in life 5. T he use of a new bone strength testing machine (only used in the laboratory at the moment) 6. A study comparing the colour of the eyes with the level of bone turnover chemicals in urine
Fun As a team we know the importance of community and the support that other patients and families can provide each other. To support this we have organised “Fun Days” and recently a Christmas party, with help from Sheffield University medical students and sponsors. It was a great success - seeing patients dance the afternoon away, meet Santa and make new friends was fantastic.
Research Projects Vibrating Plates Birmingham Children’s Hospital
Whole body vibration is a new treatment option to improve mobility, muscle strength and possibly bone strength.
1. Medicines e.g. bisphosphonates
Dr Wolfgang Hogler
We are inviting children between 5 and 18 years of age with Osteogenesis Imperfecta (type 1 or 4) to take part in a randomized controlled trial at Birmingham Children’s Hospital. Inclusion criteria include a mild to moderately decreased mobility, minimum requirement is the ability to rise from a chair. Children need to be either off bisphosphonates for more than 6 months or on bisphosphonates for more than 2 years. We will be testing whether daily vibration training (2x10min) for 5 months improves mobility, balance, muscle strength, and bone strength. Children will be trained to use the vibration device and subsequently the device will be delivered to the child’s home, where training will be supervised and monitored by a physiotherapist. In 2010 the Brittle Bone Society provided Dr Hogler with funding to carry out the Whole-Body Vibration Research. To read the latest findings please visit www.brittlebone.org
7. C omparing the DXA (bone density machine) generated spine pictures with regular spine x-rays 8. G enetic testing in mild OI when the collagen genes are normal
Nuffield - Rare Bone Network RUDY - The Rare UK bone, joint and blood vessel Disease Study - will develop detailed phenotypes of patients with rare musculoskeletal conditions to identify subgroups of patients with these conditions, and provide a platform from which collaborations with the NHS, industry and academia can be established to develop new tests and treatments.
Dr Kassim Javaid
For the study a secure web interface based database will be used to collect and store data, and as the primary mode of interaction with study participants.
BBS study group - Elaine Rush “Being involved in this new study, where we have a few basic medical tests and fill in questionnaires on a database, is an exciting opportunity for all of us. Our involvement, as individuals, will potentially work towards getting better treatment for OI in the future - and how fantastic would that be?! I hope as many members as possible will take this Elaine Rush opportunity up, as the more information provided the better the study will be.” If you want more information on this study email alison.turner@ndorms.ox.ac.uk
In order for the research to progress Dr Hogler needs more people to take part in the trials. Recruitment is carried out in pairs, matched for gender and pubertal stage - e.g. one pair of prepubertal males or one pair of pubertal females. If you are interested in taking part in these trials please contact Dr Hogler at the Department of Endocrinology, Birmingham Children’s Hospital, Tel 0121 333 8189.
Penny Clapcott
Gareth Cumming
Christopher Lynch
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Oliver & Olivia Isaac BBS Factsheets wish list OI Awareness Bears Campaign Each support group coordinator received a bear to take into primary schools in their area to help raise awareness of Osteogenesis Imperfecta. We consulted with POINT and one of our Cool Bones mentors, Tori Siegler, regarding the project and after having a trial run at a local school we are confident the project will be a success. The campaign is designed to explain Osteogenesis Imperfecta to primary school children, in age-appropriate language in a way that will help them to understand what the characteristics of the condition are and how they can help their friends with OI. If your child is aged 4-10 and having difficulty at school and want an opportunity to help the other children understand the condition, you can contact us and arrange for Oliver or Olivia Isaac to visit your child’s school. The bears are accompanied by their wheelchair, crutches and plaster cast as well as educational materials including a PowerPoint and activity sheets. For secondary school children aged 11-15 we are working on another age-appropriate PowerPoint. Alternatively, you can purchase a bear for yourself or as a gift by completing the purchase form that can be found on our website www.brittlebone.org
The feedback throughout the last seven months has been extremely positive and shows just how helpful these are to our membership. We have had requests from parents, individuals, organisations and schools regarding the factsheets.
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ITTLE BR
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Coming to a School near you!
In July we launched our new BBS factsheets covering a variety of topics from Managing Fractures to Adults with OI and Hearing Loss.
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OsteOgenesis imperfecta factsHeet
Osteogenesis Imperfecta Osteogenesis Imperfecta (OI) is a genetic condition present from birth. Its most striking feature is that fractures may occur easily. Therefore it is frequently called “brittle bone disease”.
Description of OI OI is a disorder of collagen, a protein which forms the framework for the bone structure. In OI the collagen may be of poor quality, or there may just not be enough to support the mineral structure of the bones. This makes the bones weak and fragile and results in the bones being liable to fracture at any time even without trauma. Some people with OI, however, hardly have any symptoms but in others OI may lead to physical disability requiring the use of walking sticks, walking frames or wheelchair s. As the composition of collagen in the bone is not correct, even when there are no fractures there will be other problems connected to the condition; such as the ligaments stretch more easily, allowing dislocation of joints. The joint hypermobi lity can significantly affect the quality of life as it results in fatigue of many muscle groups. As a result the mobility and performan ce of ordinary day tasks of everyday living are impaired. The majority of individuals with OI suffer from bone and muscle pain.
How many people have OI?
The number of people with OI in the UK and Ireland is unknown. This is due to it being difficult to diagnose. Many doctors are not familiar with the condition and many cases go undetected. The best estimate suggests approximately 1 in every 15,000 people will have OI.
How Is Osteogenesis Imperfecta Diagnose
No single test can identify OI. To diagnose F F F F F
d?
OI, doctors look at: Family history Medical history Results from a physical exam X-rays and Dexa scans to assess bone density are usually done If deemed necessary genetic testing can also be carried out
As promised we will review these factsheets on a yearly basis in conjunction with our Medical Advisory Board and POINT to ensure they are accurate and up to date. We plan to add to this eleven strong list of factsheets with the addition of a further two covering Nurseries and Car seats/prams. If you feel you have an interesting topic that the BBS should cover please contact rebecca@brittlebone.org
Cool Bones Programme
Conference 2013 saw the successful launch of our new project for 11-15 year olds, Cool Bones. Talks and workshops were delivered by a Psychologist, Dietician, Orthopaedic Surgeon, Occupational Therapist and Physiotherapist. The aim of the project was for young people to feel informed about their health, and empowered by the talks given by their VOICE mentors explaining their achievements. As part of this project we are creating a forum, that the young people can access to discuss their concerns and to help them network with their peers. In addition, we will produce a separate Cool Bones newsletter (E-Zine) containing stories about the young people – their achievements and fundraising ideas. We are now planning for the second year of this project and are asking the young people for their input on discussions and activities. If your child has a great idea for the event, or would like to contribute to the newsletter please contact Rebecca on rebecca@brittlebone.org
BBS thank UCL School of Slavonic & Eastern European Studies Welfare officer at UCL Thines Ganeshamoorthy nominated our UK Charity and we can’t mask our gratitude! Trustee Sam Renke had the pleasure of representing the BBS at a masquerade ball in London on 6th February, and was guest of honour to receive a welcome donation from the student committee who raised a magnificent £2622 for us. Sam and Thines look extremely elegant and it seems the night was a runaway success!
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Aspire2 Magazine Claudette Day and Tori Siegler both contributed to the article – this is what Claudette told us about being interviewed. I was approached by the Brittle Bone Society team, whom I had been volunteering with for some time, to get involved with their partner organisation the DAA (Disability Action Alliance) http:// Claudette Day disabilityactionalliance.org.uk/ and contribute to a feature in a magazine called Aspire2.
Common Ground I was pleased to take the opportunity to highlight common ground that connects disability to disability. Aspects of disabilities vary, as do their severities, but there are many that are commonly experienced in relative quantity, such as isolation, self-esteem issues, social anxiety etc.
Dates for your Diary 28th February 2014 Rare Disease Day
16th March 2014
Stafford Half Marathon
2nd April 2014
Tesco’s Crewe Extra collection – collectors needed
13th April 2014
Virgin London Marathon
30th April 2014
Tesco’s Rutherglen can collection – collectors needed
6th May 2014 Wishbone Day
13th July 2014
Tori Siegler
OI Listen Up Sometimes hearing people’s individual stories struggling with these particular hindrances can help relieve people of them. This is what propelled me to share my story in the ASPIRE 2 in a feature called ‘OI Listen up’, though I was rather hesitant at first from the anxiety of being so brutally honest with, not only a portion of society, but mainly myself.
Doors Opening Up Even though my aim in creating a significant article to a random reader was, in my view, possibly not accomplished, it led to a growing momentum of good and, ironically, the opening of even more doors a pertinent metaphor which was the aim of my article!
Thanks I’d like to thank everyone for making it possible to my friends and colleagues at the BBS and to the team at the UK Office of Disability who produce this magazine that enables disabled people to speak up for themselves. You can see the full article covering Claudette and Tori’s stories at http://odi.dwp.gov.uk. To find out more about the UK Government plans please see www.odi.gov.uk/fulfilling-potential
British 10k London Run – places still available
23rd July – 3rd August 2014
Commonwealth Games – contact Christine to collect
22nd – 24th August Annual Conference
21st September 2014 Bristol Half Marathon
5th October 2014
Cardiff Half Marathon
6th October 2014
Royal Parks Half Marathon
27th October 2014 Dublin Marathon
23rd November 2014
Benidorm Half Marathon
19th April 2015 (tbc)
Virgin London Marathon – places available contact Christine
Touchbase Update - January 2014 https://www.gov.uk/government/publications/touchbase-dwpnews-for-advisers-and-intermediaries-january-2014
DWP intends to appoint additional regional providers to carry out the assessments.
A fourth independent review of the Work Capability Assessment has been published with recommendations from Dr Paul Litchfield. He proposes that DWP should simplify the process, improving the way people feel they are treated.
Personal Independence Payments (PIP) reassessments instead of Disability Living Allowance (DLA) are being rolled out in areas across Scotland throughout January and in February will begin in the North of England.
He also suggests the improvement of knowledge of mental health and to continue to streamline the decision-making process.
Invitations to claim PIP will only apply when the current fixed DLA award is ending, a person turns 16 years old, or where there has been a change in care or mobility needs. DWP will inform you if this is going to affect you.
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BBS Membership As mentioned in the Summer Newsletter and voted by Members at the 2013 AGM it was agreed to simplify our Membership fee and structure.
Members will now pay £20 per annum. The society will continue to respect signed up life members, but hope they will consider becoming regular supporters. We request any member with a regular standing order Coreen for membership to contact their bank and arrange for this to be increased to £20 so you may continue to receive Member benefits. If you choose not to contact your bank you will automatically become a Supporter, but will no longer qualify to vote at AGM meetings.
BBS Supporters Launch
(be a member and a supporter) We appeal to BBS members and ask you to encourage friends and family to sign up as Supporters by completing our supporters form which can be found online or by phoning or emailing our head office on 01382 204446. We are asking for just £10 contribution per year, and if you wish you can give more. Being a BBS Supporter will work for people who want to contribute but may not wish to become involved in events or require any other support, they simply like what we do and want to see our charity flourish and grow. Or you may be a mum or dad with a youngster attending Cool Bones and see this supporters package as a step up till your child is old enough to become an active member with voting rights and fully participating in their charity. We will of course respect all previous arrangements for life members who have duly paid their one off fee, but some might consider making a further regular donation by paying just £10 per year or whatever you can afford. So if any of the above seems a reasonable option for you, then please get in touch to support your Charity and contact coreen@brittlebone.org
WISHBONE DAY Is turning 5!
With just 67 days till Wishbone Day let’s get our thinking caps on for a big UK and Republic of Ireland celebration. Get your yellow on and make those plans. Please start sending in your pics for our new website – and any stories you want us to publish we are happy to promote.
OIFE News
October saw the First Central-American OI Congress to instruct orthopaedic surgeons about the management of OI patients, held in Panama City. OIFE, along with the Panama Foundation, played a vital role in this initiative by funding travel for the two doctors to attend the Congress, from Spain. This project included extensive medical exams of both adults and children in Panama, performing major rodding surgery in children and speaking at a seminar about OI for healthcare professionals. As a result of the Panama Foundation’s dedication the national health administration has decided to cover treatment costs of people that are treated at the proposal of the organisation, as well as purchasing 200 F-D rods. OIFE will join the Finnish OI Association to celebrate their 35th anniversary which takes place in September 2014. The BBS would be pleased to see representatives from the UK attend this event as mentioned in our last newsletter.
OIF Events
The 12th International Conference on Osteogenesis Imperfecta hosted by OIF will be held in Wilmington, Delaware from 12th-15th October 2014 and will include a variety of medical topics associated with OI, including new genes and their mechanisms and issues of other organ systems. Additionally, the 2014 OI Foundation National Conference will be held from 1st-3rd August in Indianapolis, Indiana. For further information about registration and the conference programme please visit www.oif.org
60 miles bike ride by Harry & Max 13th July Harry Watson and his friend Max Haworth are good friends of Harry Crookham Burke and they are cycling a 60 mile Bike Ride from Manchester to Blackpool on 13th July 2014 for the BBS. Harry Watson said: “I have a dear friend who has brittle bones and I would like to raise money for this charity. I have cycled this bike ride before; I did it last year for Rosemere Cancer Research and I raised just shy of £400; hopefully I’ll raise about the same this year.”
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Diane Crookham Burke said “I was so touched yesterday when Harry Watson came over to tell us that he had contacted the BBS and was doing the bike ride for the charity.
“He and his friend did it for the first time last year. I just think it’s amazing that two young boys have put the thought and effort in without any prompting from anyone. I’ve told him I will support him any way I can and hopefully he will raise a substantial amount for the society. I think at the age of 15 this is a remarkable task to take on.” JustGiving page : http://www.justgiving.com/harry-watson1
We think its amazing too! Good luck Harry and Max.
Conference 2014
BBS Annual Award nominations
The annual AGM and Conference for 2014 is confirmed for the weekend of the 22nd to 24th August and will be held at the Park Inn Hotel, at Heathrow Airport, London.
If you have somebody in mind whom you would like to see rewarded for their volunteering, their achievements, basically anything that marks special consideration, please let us know. If it fits with our categories we would love to consider this. The awards we want members to suggest are in the O.I. Can category but we will consider any new ideas submitted.
A registration form is now available online. http://www.brittlebone. org/bbsconference.html. We are pleased to be able to announce the date and venue early in the BBS Calender, therefore if anyone wishes to arrange to pay monthly instalments please contact coreen@brittlebone.org BBS Trustees continue to make provision to offer financial assistance to those delegates who request help with fees to attend. To gain access to the ‘Assisted Conference Fund’, we recommend those seeking to apply do so as soon as possible to BBS HQ. Please complete the application forms provided on our website. The funding is allocated in accordance with a fair process including helping those who haven’t previously attended, however all circumstances are given due consideration. (Alternatively you can telephone the office and ask for a form to be posted out to you).
Early Bird Rates
Costs
All prices include VAT at current rate of 20%
For Bookings made prior to 1st July 2014 Full payment must be received by 8th August 2014
BBS Members Cost per person
No of people
Non BBS Members Cost per person
No of people
Standard Rate
For Bookings made after 1st July 2014 Full payment must be received by 8th August 2014
BBS Members Cost per person
No of people
Non BBS Members Cost per person
Full weekend package per person (single occupancy)
£250.00
£270.00
£270.00
£285.00
Full weekend package per person (double/twin occupancy, based on two adults sharing – please note single occupancy rate applies if 1 adult sharing with child)
£185.00
£205.00
£205.00
£220.00
Children between 8 and 15 (Full weekend) Rate for day rates please contact the office
£54.00
N/A
£74.00
N/A
2 days (Saturday & Sunday) with Saturday night accommodation (single occupancy) Includes celebration dinner on Saturday evening
£175.00
£195.00
£195.00
£210.00
2 days (Saturday & Sunday) with Saturday night accommodation (double/twin occupancy, based on 2 adults sharing) Includes celebration dinner on Saturday evening
£122.50
£142.50
£142.50
£157.50
1 day (Saturday) with Friday night accommodation (single occupancy) Includes group dinner on Friday evening only
£125.00
£145.00
£145.00
£160.00
1 day (Saturday) with Friday night accommodation (double/twin occupancy, based on 2 adults sharing) Included group dinner on Friday evening only
£92.50
£112.50
£112.50
£127.50
Day Delegate only for 1 day (Friday evening meal)
£20.00
£30.00
£30.00
£40.00
Day delegate only for 1 day (Saturday) – includes access to exhibition area, conference & workshop sessions plus a buffet lunch, and celebration dinner (per person)
£50.00
£65.00
£65.00
£80.00
Day delegate only for 1 day (Sunday) – includes access to exhibition area, conference & workshop sessions plus a buffet lunch (per person)
£30.00
£45.00
£45.00
£50.00
No of people
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DENTIST DEMO
VOICE HOODIE CONTEST
So Emily Peckham aged 7 challenged herself to read a 499 page book called ‘Demon Dentist’ and arranged for people to sponsor her to finish. Emily raised a whopping £82.70. Emily said “it made me feel happy to help and I hope it helps people get better.”
Take this opportunity to have your design immortalised on a BBS Hoodie. It’s always difficult picking a winner, but we want to see as many ideas as possible. Send your design by email to Rebecca@brittlebone.org or you can send in your drawing by post to our Head Office addressed to Rebecca Bramhall Support Worker.
A young girl wrote to the BBS telling us how she watched a programme on CBBC about brittle bones – featuring Star Healey ‘My Life’ and that after watching she really wanted to help.
We are exploring possibility of sending Oliver or Olivia out to Emily’s school to teach all the children a bit more about OI.
POEM BY SOPHIE ERRINGTON B
is for brilliant weekend at the hotel
R
is for red white, pink green and blue jelly
I
is for incredible breakdancing
T
is for talk talk talk
T
is also for togetherness with the Cannons
L
is for lunch….was GREAT!
E
is for Excited about the disco!
B
is for breakfast, toast…mmmmmmmmmmm
O
is of course I will dance
N
is for never want to leave
E
is for everlasting talks
S
is for slideshow – with me in it!!
Safer streets level playing field for OI
After a number of recent accidents on Britain’s roads and pavements we feel it’s time to mount our own campaign. Please get in touch at bbs@brittlebone.org and help us highlight that not just cars get damaged by potholes. But more importantly people do!
OI - BBS better hotels Campaign
After many years of hosting events for members the BBS would like to inform the hoteliers how they might just do it a little better. Join us in changing the way hotels view accessibility and how they are graded.
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Its not too late to send in your ideas for the design of this year’s hoodie.
The decision about the winner is completed by a vote through SurveyMonkey involving delegates who will be attending VOICE.
Important Notice As this copy goes to press we would like to say thanks to all BBS fundraisers; if we have omitted any of our fundraising stars from this issue, or their items have not yet been finalised or sent in to us, we will be delighted to feature them in our next newsletter. Please contact Christine at chris@brittlebone.org or phone 01382 204 446 if you would like a fundraising pack full of lots of ideas on how to fundraise like any of the above events. Remember to let us know about your fundraising events and we will promote them for you on the BBS website www.brittlebone.org , Facebook and Twitter.
CREDITS Editor
Patricia Osborne | patricia.osborne@brittlebone.org
Sub Editor
Harry Venet, Trustee
Editorial Assistance
Coreen Kelday | coreen@brittlebone.org
Support
Rebecca Bramhall | rebecca@brittlebone.org
Fundraising
Christine Hope | chris@brittlebone.org
General Enquires
Annette MacIntyre Tel: 01382 204446 | bbs@brittlebone.org
Print & Design
Winter & Simpson Print | sales@wintersimpson.co.uk Registered Charity Nos. England & Wales 272100, Scotland SC010951