A-T Society News

ISSN: 1366-0209 January 2013 No. 46 A-T Society News In this Paralympic edition: • Two new patrons enter the ring • Yossi Shiloh looks to go all the way to the line • Paralympic cyclist Roxy Burns is a star in London • Neuroscientists in wheelchairs on the podium in Washington 2 A-T Society News Ataxia-Telangiectasia is a rare, genetic, neurodegenerative disease. It starts in early childhood and affects many parts of the body causing severe disability. The A-T Society was established in 1989 and is committed to helping, supporting and advising all people living with A-T. The Society aims to improve quality of life and quality of care for people living with A-T while actively promoting research to lengthen lives and ultimately bring about a cure. We do this by: providing information and support; working to achieve better health and social care services; promoting and funding high-quality research; speaking out to ensure that the voices of people affected by A-T are heard; and raising awareness of A-T. Support grants Contents Upcoming events 3-4 Diary 11-15 People Lian Yarlett, chairman Fantastic Florida Page 12 William Davis, chief executive Paralympic special Interview with Yossi Shiloh 5-7 News Page 5 Vincent Poupard retires 16-17 Research Research partnership Betamethasone study Two new patrons A-T Neuroscience Forum in Washington 8-9 Support services 18-28 Fundraising Page 28 Benefits update Page 14 Editor’s Comments Many thanks to all contributors. The copy date for the Tel 01582 760733 next issue is 1st May 2013. Please send comments, Fax 01582 760162 ideas, articles and pictures to: [email protected] atsociety.org.uk Beatrice Prokofiev 07841 485330 Registered Charity No.1105528 [email protected] The opinions expressed in A-T Society News are those If you would like to receive this of the individual authors and not necessarily those of newsletter by email as a pdf file, please the A-T Society. let us know. A-T Society, IACR-Rothamsted Cover picture: Emily with TV presenter/Paralympic Harpenden, Herts AL5 2JQ wheelchair basketball legend Ade Adepitan A-T Society News Diary 3 View from the chair Lian Yarlett, chairman of the A-T Society, looks back at a busy year for the Society and forward to 2013 – which promises to be another action-packed year We are coming towards the end direct at the office. of 2012 already, and it really has been a busy year. From its foundation, one of the Society’s key missions has been There have been many highlights to ensure that the care it provides and for me, as always, the is total – supporting the child and Family Day is at the top of the the family with care and advocacy, list. But this year the Cambridge as well as promoting and conference has to be there too. funding research to develop our This was an incredibly valuable understanding of and treatments investment – both for the near for A-T, and raising awareness. future and the long term – and I am very proud that the original was extremely successful in vision remains strong and that we encouraging researchers and are able to maintain the balance clinicians to collaborate more and of providing practical care, which share knowledge to drive forward makes a real difference to our treatments and care. It led to children today, with research that interest from new key players, not delivers improvements and, in the previously involved directly with long term, will change the future. 2013 is already looking to be a A-T. Some very important joint very positive and interesting year. work has already commenced and One of the most important people The Ataxia-Telangiectasia World some exciting developments are in originally shaping this vision Conference is being hosted here under discussion for 2013… We and later making it a reality is in the UK; there are a series of will keep you posted. Vincent Poupard. Vincent, who new research projects we are has been a trustee and treasurer looking to fund and an exciting Of course, we just can’t get of the Society for many years, fundraising programme looks everything into each edition of has now stepped down from the very promising (although we can the newsletter – there is simply Board. On behalf of everyone, I always do more!). I hope to see too much. If you’re into computers would like to say a very big thank you at our Family Day and until then keep any eye on our website you for his personal strength and then I wish you all a Happy New or join us on Facebook where commitment for the benefit of Year. we post up-to-date news and others and to wish him well for the developments, or contact us future. Lian Mugs, Bags and Wristbands We are delighted to offer a limited edition A-T ‘Keep Calm’ mug. These are the perfect gift, ideal to make you smile with every cuppa! The mugs retail at £5 and you can purchase online from our website. You can also pick up Jute Bags for £4 and our glow in the dark wristbands for just £1. Please make use of the online shop – it’s there for you! 4 Diary A-T Society News Just William William Davis considers the findings of the My Life report, which shows that there are very different views on the importance of research I sat down to write this column, time. Often, when someone is planning to talk about research. first diagnosed, they and their A lot has happened this year families see research as the including the recent very interesting prime consideration, hoping to forum organised by the A-T see significant improvements in Children’s project. But as my treatments before the condition computer warmed up, into my worsens. However, over time, when inbox popped the first draft of the progress perhaps hasn’t been as report on the findings of the My Life rapid as they hoped, or their needs project. for support become greater, they may come to give more importance If you haven’t heard of it – or don’t to other work around services, remember – this was a series advocacy or practical and financial of interviews carried out by the help. University of York with young adults with A-T and their families. It is a challenge, particularly for small organisations like ours, to be The report makes fascinating effective in providing help in all the reading and offers a lot to think different ways that people want. It about and work on in the months It is a challenge, is even harder in a condition like ahead. However, given what I was particularly for small A-T which affects people from early about to write, one thing particularly childhood to advanced adulthood. If struck me: the ambivalent attitude organisations like ours, to you try to be all things to all people, of young people with A-T to be effective in providing the danger is that you get lost. research. help in all the different The answer, I think, is to recognise Some people interviewed ways people want. the challenge, understand what it were positive about research, is that different people want and recognising that it gave hope of a expect and plan as best you can to cure, if not for themselves, then in being treated like a guinea-pig”. meet these varying needs. the future. While not in the report, another young person with A-T has said I hope that the A-T Society is However, others thought differently: to me: “I don’t support research. doing this. We are increasing our “if you’ve got A-T there’s no cure Without A-T, I wouldn’t be me.” commitment to research and by for it. So I don’t like [research] at the middle of next year we aim to all... I’m not interested”; “I don’t like These comments may come as have a portfolio of active research a surprise to some of the many projects that we are funding. At people who consider that research the same time, we will do more to should be one of the Society’s provide support to people in living biggest priorities. However, they with A-T, now – and an important underline the fact that there are a part of this will be talking with wide range of views about what adults with A-T about what we can our priorities should be. We have do for them, based on the findings to understand and, as far as of My Life. we can, respect these different opinions. But it is equally important that you keep telling us what you want us to This is a normal issue for a charity do. We may not be able to do it all, dealing with a long-term medical but we are here to do as much as condition that has no effective we can. Bryony Beresford presented the My Life treatments. It is also very common project at the family day in June that people’s views change over Have a happy, healthy 2013. A-T Society News News 5 Vincent Poupard retires It is with a mixture of sadness held by so many people, both and immense gratitude that we within and beyond the Society, publish the news that Vincent has owe an enormous amount to his stepped down from the Board of influence. Trustees. From its inauguration 23 years ago, Vincent has been the However, in addition to the skills Society’s treasurer and at other and knowledge that he brought, times its chair.

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