Huntington’s disease youth charity celebrates lottery funding award

Scotland’s only charity supporting young people affected by Huntington’s disease (HD) in their family has been given a quarter of a million pounds in Lottery funding.

The Scottish Huntington’s Association’s Youth Project (SHAYP) has received £249,708, a share of almost £5 million awarded by the National Lottery Community Fund in Scotland.

Set up in 2001, the project provides support for children and young people growing up in families affected by the disease.

The degenerative condition is hereditary and stops parts of the brain working properly over time, often resulting in death.

The grant will enable the charity to continue its one-to-one sessions, residential camps and social activities for another two years.

A mother and daughter from Kilmarnock, East Ayrshire, whose family are facing a battle with HD, have welcomed the grant.

Jodie Fitzsimmons’ mum Susan and grandfather Jim suffer from the hereditary disease, and the 16-year-old student helps to care for him.

Jodie, who does social care course at college, 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.”

Jodie’s mum Susan 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.”

Kirsten Walker, a youth advisor at 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.

“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 the £4,948,984 grant from The National Lottery Community Fund, previously known as the Big Lottery Fund.

Announcing the funding, National Lottery Community Fund Scotland Chair Maureen McGinn 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 Fitzsimmons 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.”