Born from Branches and volunteers, and founded by families for families

Scottish Huntington’s Association has Branches in Tayside, Fife and Moray, run by volunteer members who have personal experience of Huntington’s disease.

Branches had an instrumental role in establishing Scottish Huntington’s Association and fighting to secure services for families throughout the country. Each continues to play an important role in providing help and support at a local level, including offering a significant source of interaction for people with Huntington’s disease, their families, carers, and friends. They are an integral part of, and form a vital link with, the national organisation.

Here we meet Tayside Branch secretary Ian Balfour. A member for over 30 years, Ian shares – in his own words – his experiences of Huntington’s disease and the journey, influence and continuing impact of the Branch.

“Dad was ill for most, if not all, of my childhood”

“When I was born in 1968 my mum was 42 and my dad was turning 55. My brother was nearly 14 and my sister was 11. I like to think I was a pleasant surprise!

“Because he was around the same age as my friends’ grandparents, I didn’t think it strange that my dad spent a lot of time in bed. He was diagnosed in the mid-1970s but

little was known about Huntington’s then, other than it was hereditary and had no cure.

“I was in my early teens when I first heard the term Huntington’s Chorea. There was no support and no internet so I searched articles at the local libraries. Back then even some GPs had little experience of Huntington’s and there was a lot of misinformation, including that it could only be passed down the male side of families.

“Dad passed away peacefully at home in 1985, having been cared for by my mum with no outside support. Around then we learned about the Association to Combat Huntington’s Chorea, a UK-wide charity, and we donated Dad’s funeral collection. A few years later I did a sponsored half-marathon and started to have regular contact with them.”

“I was hugely impacted by a TV medical series”

“I remember an episode of Where There’s Life, presented by Dr Miriam Stoppard in the 80s. It featured US scientist Dr Nancy Wexler studying a remote community in Venezuela with a high incidence of Huntington’s, and she was confident that finding the cause could lead to a cure.

“I can’t explain how significant and emotional this was for me. The families’ living conditions were poor and there were so many people with the chorea movements, mannerisms and facial expressions that I had only seen with my dad.”

“It all began with Branches.”

“Scottish Huntington’s Association was founded in 1989 and Branch campaigning enabled the charity to grow and employ specialist staff. Branches were the local support for families, providing help, advice and friendship. In 1990 there were meetings in Aberdeen, Edinburgh, Strathclyde, Fraserburgh and Ayr.”

“So how did I become involved?”

“In the early 90s I went to a Family Conference in Dundee with Bill Husband, my sister’s father-in-law. We didn’t now anyone and sat next to a lady who introduced herself as Sheila Simpson. Little did we know that day the role Dr Simpson was to play in our family’s life, and how grateful we would be.

“Then, along with my brother-in-law David, we joined the Branch. Bill was a great asset – a retired TSB bank manager, he became Branch treasurer, and for a while was also honorary treasurer for the Association. His contribution was invaluable.

“We focused on support, fundraising and reducing the isolation felt by families. We also invited speakers including welfare benefit advisors, speech and language therapists, and occupational therapists, and campaigned to persuade local health authorities that families needed specialist support.

“In the early 2000s our Tayside HD Specialist, Paula McFayden, was appointed. We’ve been so fortunate in the calibre of people who have become involved and the long service of staff, including Paula, shows just how dedicated they are.

“Back then Branches also organised local Family Conferences and members sat on Association committees. I was on the Executive Committee and later, as Chair of the Tayside Branch, the Scottish Huntington’s Association Council.

“Working – and cycling – together!”

“Our original Branch covered a large area then Chair Brian McKechnie moved on to form the Fife Branch, which still runs today. We all worked together, including the annual fundraising trip to Millport. Glasgow and Ayr hosted while Tayside and Fife hired a bus to take families to Great Cumbrae for a sponsored cycle.

“The coach left Forfar at 7.15am, picking up in Dundee and Fife. Always a stop at the chippy in Millport before the ferry back to Largs and the long bus journey home. We took part in many activities but it was when Mary Cunningham and her volunteers got involved that the serious fundraising took off.

“A couple of personal highlights”

“I attended the European Huntington’s Conference in Norway in 1996 and two years later it was the turn of Scottish Huntington’s Association to host the event. It was held at Stirling’s Management Centre in 1998, with the spectacular Wallace Monument as a backdrop.

“Another favourite memory is of our West Highland Way walk. I can’t confirm or deny whether alcohol at our 1996 dinner dance was involved, but before the night was out I had my first volunteers. A few work colleagues and police officers joined us and TV detective Blythe Duff of Taggart fame came along to ‘arrest’ Huntington’s disease.

“It cost just £90 for seven nights’ accommodation and we ‘rehydrated’ in the pubs each night. But everyone was always ready the following morning, and together we raised £10,000.

“Looking to the future”

“The charity’s growth has been amazing; families now have local HD Specialists in most of Scotland and we have the world’s first National Care Framework for Huntington’s Disease.

“While only three Branches remain, it’s important to recognise what they provide as part of the wider Association. We’re looking for new members and ideas about what we can do differently to attract support, ensure we provide what families need, and be fit for the future.”