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Huntington's disease charity welcomes share of £5 million National Lottery cash

Scotland’s only charity providing specialist support for young people who have a diagnosis of Huntington’s disease (HD) in their family is amongst 27 groups across the country today sharing in almost £5 million of cash from the National Lottery Community Fund.

For a full list of awards announced today in your area see accompanying list of grants.

A mother and daughter from Kilmarnock whose family are facing a battle with HD have today welcomed a grant of £249,708 to Scottish Huntington’s Association’s Youth Project (SHAYP). Set up in 2001, the project provides children and young people aged between eight and 25 growing up in HD families with practical and emotional support.

Jodie Fitzimmons, 16, knows how difficult it can be to watch a loved one live day to day with this hereditary condition as both her mum Susan and grandpa, Jim, have HD. Jodie, who has recently started a Social Care course at college and helps her mother to care for her grandpa, said: “SHAYP helps me to understand what is happening with my grandpa, to learn more about HD and know what’s wrong with him so I know how to help. It’s great coming here as it helps us to cope, share hints and tips and make friends with those who understand.”

Susan, 42, who has two other children, Robert and Shawni added: “All three children have been involved with SHAYP for a few years now and they wouldn’t be able to access this support anywhere else. I can’t emphasise how important it is to them and to our family.”

Today’s award will allow the Scottish Huntington’s Association’s Youth Project to continue to offer a wide range of support for young people including one to one sessions, advice and information, residential camps and social activities for another two years.

Kirsten Walker, Senior Specialist Youth Advisor, SHAYP, said,

“Growing up in a family impacted by Huntington’s disease is incredibly challenging. Not only does the young person have to watch their parent dramatically change and deteriorate but often role reversal occurs with them taking on a caring role whilst living with the knowledge that they too could develop this devastating condition.

“As HD is not widely known about many young people we work with tell us they often feel isolated and alone so helping them to meet others in the same situation is crucial to helping them cope with daily life and the ongoing changes in their parent’s condition.

“Without this award from The National Lottery Community Fund we would have been faced with the real prospect of cutting services which would have had a devastating impact on the children and young people we work with so we are eternally grateful.”

Across Scotland, 27 community projects are sharing in a bumper £4,948,984 from The National Lottery Community Fund, previously known as the Big Lottery Fund.

Announcing the funding, Maureen McGinn, The National Lottery Community Fund Scotland Chair, said:

“It’s all thanks to National Lottery players that today’s £5 million investment is able to reach into communities across Scotland and transform the lives of local people.

“Some of the funding will help other young people, just like Jodie, cope with their caring roles and give them the chance to connect and bond with others in a similar situation. The support the Fitzimmons family receives demonstrates the importance of this work and how this project offers a range of tailored support to young people when they need it the most.”

Last year The National Lottery Community Fund gave out over £48m of National Lottery funding to community projects across Scotland. Over 1130 projects benefitted from this, enabling people and communities to bring their ideas to life.

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Notes to Editors

About The National Lottery Community Fund

We are the largest community funder in the UK – we’re proud to award money raised by National Lottery players to communities across England, Scotland, Wales and Northern Ireland. Since June 2004, we have made over 200,000 grants and awarded over £9 billion to projects that have benefited millions of people.

We are passionate about funding great ideas that matter to communities and make a difference to people’s lives. At the heart of everything we do is the belief that when people are in the lead, communities thrive. Thanks to the support of National Lottery players, our funding is open to everyone. We’re privileged to be able to work with the smallest of local groups right up to UK-wide charities, enabling people and communities to bring their ambitions to life.

The National Lottery Community Fund Scotland is focused on helping communities across Scotland thrive through its five year £250m funding scheme as well as small grants programme, National Lottery Awards for All Scotland.

Since March 2007 The National Lottery Community Fund in Scotland has taken devolved decision on National Lottery spending. The committee, led by Chair, Maureen McGinn, plays a strategic role in the future direction of the Fund in Scotland.


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