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A-T Society News ISSN: 1366-0209 August 2012 No. 45 A-T Society News In this month’s edition • The Family Weekend takes off at Stansted • Top tips from people with A-T and their families • How to protect your family and assets • Clinical Research Conference 2 A-T Society News A-T Society News Diary 3 Ataxia-Telangiectasia is a rare, genetic, neurodegenerative disease. It starts in early childhood and affects many parts of the body causing severe disability. View from the chair The A-T Society was established in 1989 and is committed to helping, supporting and advising all people living Lian Yarlett, chairman of the A-T Society, looks back at a busy 2012 so far, which has included with A-T. The Society aims to improve quality of life and quality of care for people living with A-T while actively significant conferences, charity events, the Family Day and proposals by a new joint A-T fund 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. opefully the sun is shining We are very grateful to everyone Hwherever you are so that who has helped to make a you can enjoy reading this difference, and invite all of you information-packed edition of the to help us take on the challenges Newsletter. 2012 has so far been ahead for what is looking to be Editor’s Comments Contents packed with conferences and a really exciting time with many meetings, with the Family Day opportunities. Do have a think Many thanks to all contributors. The copy date being one of the main highlights, about what you might be able to for the next issue is 1st October 2012 along with charity events and do, who you might know, or might Please send comments, ideas, articles and 3-4 Diary Charity of the Year adoptions. not yet know, be it friends or pictures to: Lian Yarlett, chairman All this on top of the regular care companies. We can always help William Davis, chief executive services we provide! you with that first idea or make that first approach. Beatrice Prokofiev 5-9 News The conferences have led to 07841 485330 A-T in Morocco concrete collaborations and The Family Day is always a great [email protected] New partnership for A-T research sharing of information wherever event and we have received The Family Weekend possible, with the aim of some wonderfully positive and If you would like to receive this advancing research and our constructive feedback. This “Help us take on the newsletter by email as a pdf file, please 10-13 Support services understanding of A-T. year’s weekend was packed with challenges ahead for let us know. Voice recognition systems fun and information, and if you Top tips There is a big focus on missed it we really hope that you what is looking to be a A-T Society Protect your family and assets translational research – that is, will be able to join us next year – really exciting time…” IACR-Rothamsted Accessible holidays research which aims to develop the plans for which we are already treatments directly for the patient. working on! Harpenden, Herts AL5 2JQ 14-15 People Together with the advances in ‘My Life’ project laboratory-based work, this is all We are making a real difference tel 01582 760733, fax 01582 760162 Tom graduates in style helping us take strides towards to the lives of those affected by [email protected] Breathing training our aims and mission. A-T now and for the future… website: atsociety.org.uk Please help us to do more. Thank 16-19 Research The international research you. Registered Charity No.1105528 Clinical Research Conference conference we have just hosted Interview: Luciana Chessa has led to specific projects being Lian discussed or commenced, and a The opinions expressed in A-T Society News DATES FOR YOUR DIARY! are those of the individual authors 20-27 Fundraising number of interesting proposals for funding by the new the joint and not necessarily those of the 28 Why we made Wills ‘in trust’ – by an fund we have set up with Sparks Nottingham Clinic A-T Society. A-T parent and Action for AT. If your child has not been seen at our Nottingham Centre for at least 2 years, or your child’s condition has Cover picture: Children being entertained There is a huge amount of work deteriorated and you are concerned: you may wish to at the Family Weekend that can be undertaken for our book one of the available slots below: (please contact support and research but of Kay) course much of this is down to funding. Our care services and 15/16 November 2012 clinics give our children and 17/18 January 2013 young adults help, and I think this 7/8 March 2013 is really important. Some of the research also offers the chance Family Weekend 2013 of quite prompt outcomes, as Provisional date set for 22-23 June 2013 well as creating a basis for future developments. 4 Diary A-T Society News A-T Society News News 5 New partnership for Just William Remembering Paula A-T research William Davis, the Society’s chief executive, reflects on a successful and enjoyable Family It was with huge sadness that I heard Paula Hendrick has died after a Weekend and a Conference that has helped stimulate new ideas and collaborations short illness. Anyone who met Paula will have vivid memories of her – As mentioned in William’s diary, her humour, cheerfulness and warmth, not to mention her determination the Society has recently joined not to let A-T stop her from being the person she wanted to be and forces with Action for A-T and I write this with the memory of a group to map out priorities and living her life the way she wanted to. Paula’s positive attitude to life was the children’s medical research two highly successful events still likely avenues for future research. an inspiration to many – though her ability to be the ‘last-woman-sitting’ charity Sparks to establish a buzzing round my mind. The A-T in the bar at family weekends – “The night is young!” was her rallying dedicated fund to support A-T Clinical Research Conference But a conference like this will only cry – resulted in a fair few headaches and bleary eyes for the rest of us. research. The fund is offering 2012 in Cambridge brought have a real value if it changes an initial pot of £90,000 for together scientists, doctors and things; if it stimulates new ideas We are enriched by everyone we meet, but some people are particularly research projects leading towards researchers from around the and new research, gets people special, and Paula was one of those. I know that the thoughts, wishes treatments for A-T. world for two days of engaged working together, and so on. and prayers of many, many people will be with her family and I trust that discussion on the way forward for this will be of some comfort to them. By William Launching the partnership, William clinical research into A-T. And on that count, things are said: “Together we can make a looking good. Just 10 days after much bigger impact than we could Following straight on from this, the conference, I found myself at working on our own. Collaboration our Family Weekend saw another a meeting with three delegates A-T in Morocco is the only way to make progress huge turnout of families gather from the UK and Australia who with a rare and complex condition at Stansted to hear from leading had met at the conference. While to the best of our knowledge such as A-T and our three researchers and to network there is no organisation dedicated organisations are showing the and relax with others like We discussed how the latest to A-T in any Arabic-speaking way.” themselves. advances in MRI and imaging country, in Morocco there is an technology could help unlock active association supporting By pooling their resources in this There are more details about both the mysteries of how and why people with all Primary immune- way, the charities will be able to events later in the magazine but “I found myself at a A-T affects certain areas of the deficiencies, called ‘Hajar’. offer funding on a scale beyond I just wanted to share my overall meeting with three brain. We then mapped out a that which they could achieve impressions. proposal for a two-year research The Secretary of Hajar, a individually. It will also enable them delegates from the UK and project which would link with young woman called Bouchra to combine their fundraising efforts I will admit that I thought last Australia who had met existing projects in the USA and Benhayoun, has a daughter called for A-T research. Already, Sparks year’s family weekend at Australia. Rita who has A-T. Bouchra is in have very generously supplied Chessington had been a bit at the conference... We touch with around 30 families living both the A-T Society and Action for of a high-water mark and was mapped out a proposal At the conference, I also with A-T in Morocco, a country and to improve standards of A-T with three extra places each expecting this year’s event to be for a two-year research announced the new joint A-T where the challenge of living with a treatment and care.
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