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New drive launched to fight Huntington’s disease

A charity is appealing for more friends to help fight a devastating neurological condition.

The Scottish Huntington’s Association (SHA), the only charity in the country supporting families living with the dehabilitating degenerative neurological condition, Huntington’s disease (HD), has launched a new recruitment drive to boost support.

#youandmeagainstHD: find a friend a friend to fight HD, is looking to triple the charity’s active supporters by 2020.

‘There has been some tremendously hopeful news recently as far as progress in finding a treatment for HD is concerned,’ said the charity’s Patron, Olympic and world champion rower Sarah Winckless. ‘However, it is still a way off yet, it will come too late for some of our communityand it remain important that we can continue to best meet the needs of the several thousand people across the country who rely on us to make their lives better.’

‘We have some amazingly committed supported. In 2017 just 700 people raised £250,000 to help us deliver lifeline services to HD families last year. If we could recruit three times that number we could significantly improve the lives of so many more families who rely on us every day.’

‘We are simply asking people to spread the word about what HD is, the impact it has on people’s lives and ask them to become an active supporter.’

The SHA’s supports HD families through a network of HD specialists; a world leading youth support team and a financial wellbeing service.

HD is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow along with mental illness. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink or make decisions and will eventually need 24 hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease. There is no cure.

It is estimated there are around 1100 people living with HD in Scotland and up to 6000 potentially at risk.

‘HD has been so often been hidden in the past because of the stigma attached to it, this is changing though and once people here stories of the impact it can have on whole families, they more often than not want to help,’ added Sarah.

Watch the film to hear Lisa and Staccy stories of living with HD and how to get involved in helping people like them.

Picture shows: Sarah (right) introduces her three friends to Huntington’s disease through a rowing session on the river Thames from the left Imogen Hart, Liz Dimmock and Sally Walker.

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