Friends, family and a star guest rally for family after unexpected diagnosis
When the Martin family decides to support Scottish Huntington’s Association, they really go for it!
Their first gala ball at the Georgian Hotel in Coatbridge, Lanarkshire, brought over 130 family, friends, and friends-of-friends together – including TV comic Susie McCabe – to raise funds and spread awareness about Huntington’s disease.
Dad Philip and daughter Aiva worked tirelessly for months to organise the event as a thank you to Scottish Huntington’s Association.
And what a magical evening it was, filled with emotion, hope, laughter, dancing, games, prizes and a live auction. So far it has raised an incredible ÂŁ18,000.
“We’ll never forget that night; the love and support in the room was overwhelming. I thought we were pushing it by aiming for £10,000 but people were very generous when they heard about Huntington’s disease and its impact on families, including our own.”
It was a special moment the family needed after two difficult years coming to terms with mum Joanne’s unexpected diagnosis.
They had no idea there was any family history of the disease – and it was only a chance remark by a friend that led them to discuss the possibility with their GP.
Joanne said: “I thought I was quietly going insane. I knew something wasn’t right and kept going to the doctor but it was always put down to depression and anxiety.”
Philip added: “For a long time Joanne wasn’t well but we just couldn’t get an answer, It was draining and Joanne gave up work to try to get a bit of peace of mind but things didn’t get any better.”
When it was confirmed that Joanne has Huntington’s disease, the couple was confronted with the reality that daughter Aiva and her two younger sisters are also at risk of the disease.
“The hardest thing was talking to them about it but then a weight lifted and we began to think about how we could raise funds and spread awareness,” said Philip.
Joanne added: “We have to be strong and I have good days and bad days, like everyone else. I need to be positive because of our girls.”
Philip and Joanne are supported by an HD Specialist from Scottish Huntington’s Association while Aiva and their other two daughters Beth and Faye meet regularly with a Specialist Youth Advisor.
Aiva said: “My friends have known from the beginning and been very supportive. They ran the 5k Supernova at the Kelpies with me and two aunts to raise money, helped at the gala ball, and one of them, Jasmin, even did the Kiltwalk for Scottish Huntington’s Association.”
After dipping their toes into fundraising, the family began to aim for something bigger – and the Martin family annual gala ball was born.
All the tickets were snapped up within two days – “We could have sold twice as many,” says Philip – and Aiva hit social media to find sponsors and donations for raffle prizes and auction lots, which including signed football strips and an Aviemore short break.
And TV comic Susie McCabe, an old school friend of the couple, flew back from London where she was recording a podcast with Allan Carr to show her support family and entertain guests.
“It was overwhelming; we’re just finding out about the disease and it’s all new but people have been interested and keen to help,” said Philip.
“I’d say 75% of guests at the ball had never heard of Huntington’s which was the whole point of the night. To raise awareness, get people talking about the disease, and bring them into the community as supportive and informed friends.
“I’m always thinking about ways to get the word out there; I wear my Scottish Huntington’s Association lanyard and pin badge at work and speak to everyone I can about the disease.
“The support we’ve had from Scottish Huntington’s Association lifts us up and the advice and guidance has been brilliant. Families rely on that specialist care so we have to make sure it’s there for everyone who needs it.”