HDA news, publicity, fundraising and events
UK & Ireland Huntington's Alliance press launch
June 2009
The UK and Ireland Huntington's Alliance was launched at a special press conference which took place at the Kings Fund in London on Tuesday 9th June 2009.
The Alliance has been newly formed and encompasses the Huntington's Disease Association of England and Wales, the Scottish Huntington's Association, the Huntington's Disease Association of Ireland and the Huntington's Disease Association of Northern Ireland.
The conference was well attended and was introduced by Cath Stanley, Head of Care Services for the Huntington's Disease Association of England and Wales. The key people representing the Scottish and Irish Associations were: John Eden, Chief Executive of the Scottish Huntington's Association, Patricia Towey of the Huntington's Disease Association of Ireland and Errol Walsh of the Huntington's Disease Association of Northern Ireland.
The Associations were delighted to introduce at the press launch; Tony Hadley, lead singer of the iconic and re-formed 1980s pop band, Spandau Ballet, together with Shane Richie, actor, singer, comedian and media personality, and Sarah Winckless, World Gold medallist and Olympic Bronze medallist rower, as their Patrons.
Sarah Winckless, World Gold and Olympic Bronze medallist rower, and Patron of the Scottish Huntington's Association shared with us her story of having tested positive for the HD gene which was inherited from her mother who is symptomatic. Sarah gave a moving account of how, when she was awarded her Olympic Bronze medal, that all she wanted to do was to go to her mother who was sitting in her wheelchair beyond the press, and share this precious moment with her.
Sarah also talked of her quest to raise £10,000 in 10 days for the new Alliance, for her to come out of retirement and row at the forthcoming Henley Women's Regatta. Sarah had raised just over £1000 on the first day of fundraising and has now exceeded £6,500 in just two days. Sarah would appreciate support in raising the remaining £3,500 or more for this cause. For more information, please follow this link to Sarah's press release and details of her online fundraising page.
Jim Pollard, HD Service Director at Tewkesbury Hospital, USA spoke at the press conference about his work with the Associations within the Alliance and is pleased to continue his support wherever possible.
Tony Hadley and Shane Richie are delighted to be Patrons of the Association and spoke of their personal connections with the disease at the press launch. Both are keen to support the HDA in our work and talks have already begun as to how they may be able to help us to organise exclusive fundraising events to take place later in the year. More information will follow as soon as it is available.
Click here for more information about our new Patrons.
Cath closed the press launch by thanking everyone for attending, particularly Tony Hadley, Shane Richie and Sarah Winckless for their valuable support.
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