Spring 2020
lepra.org.uk
In this issue Find out how we celebrated World Leprosy Day! New Faces of leprosy gallery tour
Patron: Her Majesty The Queen
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LepraNews
Spring 2020
Welcome to Natasha Pratley Natasha has recently joined Lepra as the new Communications and Marketing Manager. Natasha has a degree in publishing media and 9 years’ experience in the corporate marketing sector. She feels strongly about the charity sector, saying,
Lepra facilitates the first national conference on leprosy in Bangladesh In December 2019, our Director of Programmes, Paul Watson, attended the National Conference on Leprosy in Dhaka, Bangladesh, along with our in country team from Bangladesh. Lepra, along with The Leprosy Mission, supported by the Sasakawa Foundation, has been instrumental during the organisation of this event. In a study we conducted in Bangladesh, 75% of doctors and health care staff received no training on leprosy. Lepra is striving to change that. The symposium was a wonderful show of progress and momentum in the fight against leprosy. Sheikh Hasina, Prime Minister of Bangladesh, reaffirmed the Bangladeshi government's commitment to tackling leprosy and making it a national health priority. She advocated for inclusion, political commitment, and early case detection. The chair of the Nippon Foundation and the World Health Organisation's Goodwill Ambassador for Leprosy, Yohei Sasakawa, also attended, speaking at length about the work yet to be done. Lepra look forward to to continuing our mission to beat leprosy together.
“I have a passion for communications and hope to make a difference at Lepra. The charity sector presents so many exciting opportunities for communications and social media and spreading the message of leprosy is important. I’m looking forward to the work ahead and what we can acheive.” If you have a news story that you would like to share, please do contact Natasha via email on natashap@lepra.org.uk or phone on 01206 216752
In this issue Page 3
Continuing support for the Mutemwa Leprosy Care Centre in Zimbabwe
Page 4
Leprosy fortnight – mission one crore
Page 5
New Faces of leprosy gallery tour
Page 6 & 7
Fundraising stories and upcoming events
Page 8
Iyer’s story
Join in the conversation on social media: LepraUK
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Front cover photograph supplied by Tom Bradley
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Continuing support for the Mutemwa Leprosy Care Centre in Zimbabwe Our previous newsletter highlighted our work to support those affected by leprosy at the Mutemwa Leprosy Care Centre in Zimbabwe. While the numbers of people affected by leprosy in southern African countries may be small compared to those in India, there are concerns that the disease is re-emerging and that government, NGO and private health staff no longer have the knowledge and expertise to properly identify and treat the disease. Lepra is delighted to be able to provide the skills, knowledge and expertise to the staff at the Mutemwa Leprosy Care Centre, offering a combined approach of active case finding, health worker training to improve the diagnosis and treatment of people affected by leprosy, mental health support
and manufacturing specialist footwear. Following a visit in June 2019 by Lepra staff, a shipment of specialist sandals was recently received at the centre, providing tailor-made protective footwear for those individuals affected by leprosy. In the coming months, Lepra will provide training for local cobblers in the manufacture of specialised footwear, drastically decreasing waiting times for protective sandals meaning that the people at Mutemwa can resume normal life and return to work.
detection and rapid treatment of the disease to minimise the risk of long-term disability. Drawing on our experience from highly successful programmes in India, we are hopeful that we will be able to influence local and national policy in Zimbabwe and wider southern Africa.
Our goal is to support the Care Centre as a model for best practice in southern Africa, improving early
Dr Charlotte Roberts
Multi-faith event to celebrate World Leprosy Day
Dr Charlotte Roberts, a long-term supporter of Lepra's work, is preparing to launch her new book, entitled: ‘The Bioarchaeology of Leprosy: Learning from the Past’.
On the 28th of January 2020, we were honoured to host an event in the House of Lords to commemorate World Leprosy Day. The evening was a wonderful testament to our supporters and donors, who are helping us change the lives of countless people affected by leprosy across four different countries.
Dr Roberts has kindly offered to donate the royalties from her publication to Lepra. The book will detail the historical beginnings of leprosy and how it evolved throughout the decades. Dr Roberts offers an interesting insight into the history of leprosy and the present-day challenges faced by those who want to fight leprosy and its transmission. Her book will be available to purchase in the coming months from her publisher’s website. Please visit http://upf.com for updates on the release.
The evening focused on our Mental Motivators project in Bangladesh. Mental Motivators act as counsellors for those seeking support after a leprosy diagnosis or for those too frightened to seek help. Half of those diagnosed with leprosy suffer from depression and anxiety. It is a vital service and we have trained more than 30 people to act in this capacity. The event was attended by H.R.H the Duke of Gloucester, Chair of Trustees Charles Bland and hosted by The Lord Gadhia. We thank everyone who attended and contributed to the success of the evening. We are seeking a further £25,000 in funding to scale the project up in Bangladesh, which in turn means we can support a further 3,000 people. It costs £833 to train and equip one person to become a Mental Motivator. Please help us by donating today www.lepra.org.uk/donate/donate-now
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LepraNews
Spring 2020
Leprosy Fortnight – Mission One Crore (M1C) This year, our colleagues in Lepra India marked world leprosy day by embarking on a Leprosy Fortnight! World Leprosy Day is recognised worldwide on the last Sunday of January. The day was designed to highlight the plight of affected people, but also the wonderful work being done across the globe to protect those affected by leprosy and the fight for their health, rights and safety. An ambitious appeal was launched in India “Mission One Crore”, which aims to raise the equivalent of £100,000 through various sponsored charity walks, in five different states across India. Head of Resource Mobilisation with Lepra India, Kasturi Kilaru, said of the event, "M1C as a fundraising event is unique because it is the first time in the history of LEPRA society that all the staff (500 plus at present) are involved directly in fundraising. Everyone in LEPRA is and can be a fundraiser. "I would say that the M1C journey itself is the destination as through M1C, we can ignite the spark of fundraising amongst our staff. I am already planning on how to make this better next year." M1C is not only an attempt to raise one Crore Indian rupees (around 108,000 pounds) ; but is also an opportunity journey to reach out to one Crore people with the messages: - That 60% of the global leprosy burden is in India - Together we can reverse the existing situation, through early diagnosis and early cure - People affected by leprosy are normal people India has the highest prevalence rate for leprosy in the entire world. As such, our work with our partners at Lepra India is vital. We will be joined by our Lepra India colleagues in March for the ILEP conference in Brentford. The week long event will bring together the leprosy community, deepening partnerships and continuing the fight to beat leprosy.
A legacy of hope
£12,800
could fund the running cost of West Delhi Referral Centre, which provides access to medical supplies, specialised footwear and self-help groups for those affected by leprosy and lymphatic filariasis (LF).
Leaving a gift in your will can help change the lives of others! By leaving a legacy in your will to Lepra, you can help fund vital projects that support the 7 million people known to be affected by leprosy. Your gift could • Increase the detection, treatment and follow up of people affected by leprosy, particularly among the most neglected groups. • Ensure that the Physical, Psychological, Social and Economic needs of people affected by leprosy are addressed by Lepra or others. • Ensure the rights of people affected by leprosy will be attained, with Lepra engaging at all levels to help bring this about. • Help to beat leprosy!
£18,500
could cover the cost of one of our Mobile Shoe Vans travelling to rural, isolated parts of India, which provides access to treatment, health advice and protective footwear for those affected by leprosy and lymphatic filariasis (LF).
Request an information booklet - If you would like to find out more about legacies, or request a copy of our legacy booklet, please visit our website www.lepra.org.uk/gift-in-your-will. Or you can contact our Donor Support team by telephone 01206 216700 or email donorsupport@lepra.org.uk
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New Faces Gallery Tour On the 28th of January, we launched our New Faces of Leprosy gallery exhibition at the House of Lords. This travelling exhibition, shot by Tom Bradley, and curated by Professor Diana Lockwood, will travel around the UK to highlight the stories and lives of some of those people affected by leprosy. Participants in the exhibition have lived lives of immense hardship because of their leprosy diagnosis, isolated from their families and shunned from communities. These photographs and life stories show the spirit and resilience of individuals of all age’s, backgrounds and gender and their willingness to reclaim their lives. Professor Lockwood said, “Leprosy has been a prejudiced disease for centuries. We aim to alter this negative balance through the New Faces of Leprosy project, showing leprosy patients having a normal life, working and having a family. I hope these photographs will stimulate recognition in the general public that people affected by leprosy are strong and can overcome anything.” The true tragedy of leprosy is the very fact that it is curable and yet, millions of people suffer untold
Photo by Tom Bradley
cruelty and disability as a direct result of lack of knowledge and lack of medical intervention. Discrimination, violence and ignorance are widespread and it is the aim of this project to further the cause of the people fighting against the disease.
suffering of some out there. I consider myself very fortunate to have worked with Diana and the Lepra team in Hyderabad, working to help build an image of leprosy that is dignified, and intends to bring hope and courage to those affected.”
Tom Bradley, a professional photographer with a special interest in leprosy says, “I have photographed and interviewed somewhere between 1,000 and 2,000 people affected by leprosy over the last 10 years. Many of the people we met on this particular trip have contracted leprosy since I started photographing it. It is terrible that a disease that has had a free cure since the 1980s is still affecting so many, and destroying lives physically, mentally and socially.
Throughout 2020, the exhibition will be touring across the United Kingdom and India. For further information, please check out the website. If you are interested in Tom’s work on leprosy, make sure to visit his website:
These stories from India are only a drop in the ocean compared to the
https://www.tom-bradley.com/ If you are interested in hosting the New Faces of leprosy exhibition at your venue, or are interested in attending one of our events, please get in touch via email lepra@lepra.org.uk or phone 01206 216700.
Photo by Tom Bradley
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LepraNews
Spring 2020
Fundraising stories
Take up a challenge for Lepra! Please visit our website
Schools fundraising
www.lepra.org.uk/events
In December, Carshalton High School held a Christmas Fair in aid of Lepra. This wonderful day of crafts and festivities also involved the soaking of their head teacher with wet sponges and ice-cold water! During the day, the pupils of Carshalton held bake sales, games and crafts for all to enjoy. They raised a wonderful £766. Thank you to all the students and staff for your support and we look forward to seeing what crazy ideas you come up with in 2020! Strictly Reigate Grammar School hosted an 80’s inspired Zumbathon and raised an incredible £4,519.44 for Lepra! The staff and pupils at Reigate got into the spirit of things, with leg warmers, neon and cheesy music galore! It was a fantastic achievement by all. Thank you for your continued support.
Heaven Can Wait theatre production On the 11th and 12th of February, Lepra co-hosted a play in the Andersonstown Social Club in Belfast. Our fundraiser for that area, Arlene Gormley, has been hard at work speaking with schools and local community groups about our work. The play was a huge success. We look forward to continuing our work in the North of Ireland. You can contact Arlene directly via mobile or email on arleneg@lepra.org.uk or 07470 645680.
Rock for Lepra On the 25th of January, we held a “Rock for Lepra” concert at the Fiddlers Elbow in Camden Town. A special thank you to the bands that performed; Tricky Susan, Sacrificial Slabs, King N Queen and Kerosene Gin. The event was well supported and showed a different side to Lepra’s fundraising! Rock out and raise money for a great cause!
or contact our Events Team on
01206 216700 or 07579 019301 Come Dancing
On the 22nd of December, Lepra hosted a Strictly Come Dancing event in partnership with the Regency Dance Centre in Sutton in Ashfield. A huge thank you to Andrew from the Regency Dance Centre, for coordinating the event and being such a gracious supporter. Six brave couples conquered their fears and glided across the ballroom floor in aid of Lepra. Throughout November and December, these six couples spent many evenings practising, giving up their time for such a worthy cause.
We would love to replicate this event again in dance centres across the country. So, for all you budding dancers, please do get in touch with Lucy Fenna to register your interest. Lucy can be contacted via email on lucyf@lepra.org.uk We would also like to thank Takeover Radio for their coverage of the event. It truly was a spectacular event, raising £1600 for Lepra.
Willow Weaving Workshop In November, Lepra hosted a Deer Willow Weaving Workshop. The acclaimed willow sculptor Leilah Vyner led the workshop and it was a wonderful success. It was fascinating, though difficult at times with the “withies” but everyone thoroughly enjoyed it and came away with some truly fantastic Willow Deer sculptures. The workshop raised £250 for Lepra and we look forward to doing more workshops next year!
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Edinburgh to St Andrews
Upcoming events Have a ball for Lepra! On the 16th of May, Lepra is hosting a ‘May Ball’ at the Aagrah Midpoint Banqueting Suite in Bradford. The black-tie event offers a three-course Indian meal, silent auction, music and games! The evening promises to be wonderful, with planned entertainment throughout the night. If you are interested in finding out more information or purchasing a ticket, please contact us on 01206 216700 or email Harkishan at HarkishanM@lepra.org.uk.
As most people’s motivation for New Year’s resolutions dissolve, we would like to remind everyone about our historic Edinburgh to St Andrews bike ride on the 13th of June. The 68-mile cycle will take in the historic Scottish views, all in the name of charity. Get involved! It promises to be a fantastic event, with music, refreshments and beautiful scenery. Tickets are available on our website: https://www.lepra.org.uk/event/edinburgh-to-st-andrews-2020
or, you can contact Fergus on Fergusj@lepra.org.uk. Alternatively, why not call us on 01206 216700 and secure your place for this historic ride!
London Marathon 2020 In April, nine brave souls will take on the momentous London Marathon on behalf of Lepra. Each year, almost 40,000 people cross the 26.2-mile finish line. This year, one of our very own will be tackling the race for Lepra. Miranda Edwards, our Communications and Fundraising Assistant, will run the Marathon. We wish Miranda, and the rest of our runners, the very best of luck. If anyone would like to join us on the day, Lepra staff will be positioned at mile 11. If you are interested in joining us, please do make contact with Lucy Fenna via email lucyf@lepra.org.uk.
Three Peaks Our Challenge Events Lead, Lucy Fenna, has been busy organising some interesting challenges for Lepra in 2020. This year will see her and her team take on the infamous three peaks challenge. The aim will be to summit the three highest peaks in the United Kingdom (Ben Nevis, Scafell Pike and Snowdonia) in just 24 hours. This will be a gruelling challenge, but if you would like to get involved, please contact Lucy on LucyF@lepra.org.uk.
Spartan Race Series Lepra will be taking on the Spartan Race Series, held at different locations across the United Kingdom from May until October. These gruelling obstacle courses are designed to challenge you, both physically and mentally. There are three levels of race available - the Spartan Sprint, the Spartan Super and the Spartan Beast. If you would like to take part in this race series as part of team Lepra, please contact LucyF@lepra.org.uk or give us a call on 01206 216700.
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LepraNews
Spring 2020
Iyer’s story
Leprosy Review’s exciting future Lepra leads the publication of Leprosy Review, the largest international journal dedicated to leprosy. The journal has been in circulation since 1930 and publishes a new edition four times a year. Leprosy Review’s Editorial Board are meeting at the London School of Hygiene and Tropical Medicine in March to discuss the exciting changes to Leprosy Review, with a new website launching, and more mobile-friendly access for readers. Photo by Tom Bradley
Iyer, a retired engineer and university lecturer, first noticed the symptoms of leprosy when lumps began appearing on his face. He visited private doctors, who were unable to diagnose him, and gave him prescriptions that did not work. At a private hospital some months later, Iyer was finally diagnosed with leprosy and was told he would die within three months. Terrified and confused, he visited Lepra’s Blue Peter Health Research Centre in Hyderabad. Iyer was started on multi-drug therapy immediately. He was also given a course of steroids and his skin lesions gradually started to clear up. Staff there reassured him that leprosy is curable and that in a few months, he would be completely fine.
of their father, but he still felt unworthy. During his treatment, Iyer gave up his lecturing job, afraid he would give leprosy to his students. He also avoided his friends for four months during treatment, afraid of what they would say or that they would also get sick.
Make sure to follow our Twitter account @LeprosyReview for updates and all the latest from the scientific community. If you would like more information, or to purchase a copy of the journal, please contact Miranda on mirandae@lepra.org or 01206 216735
He says, “In India, if you have leprosy, it is a terrible way to live. You feel like the life has gone out of you. The word for leprosy in the regional language is demeaning. People can get over the disease with courage and determination. Educating people in rural areas about leprosy might help break the myths surrounding it.”
Before being diagnosed, Iyer felt unclean and depressed. He isolated himself from his wife, using separate towels, crockery and even sleeping in a separate bed. His daughters, who live in Australia and New Zealand, were supportive
To find out more about our upcoming events, visit our website:
www.lepra.org.uk/events
Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44 (0)1206 216700 Fax +44 (0)1206 762151 lepra@lepra.org.uk lepra.org.uk Patron: Her Majesty The Queen Registered Charity number 213251 (England and Wales) SCO39715 (Scotland)