IRVINE mum of two Carolyn Jenner has taken her love of dancing along to the radio to a whole new level – by raising more than £1,000 in support of families impacted by Huntington’s disease.

Carolyn and her husband Guy took part in the Scottish Huntington’s Association Dance 100 challenge at George Square in Glasgow.

The event brought together Huntington’s families, friends and supporters from across the country to dance along to 100 songs, raise vital funds for lifeline services, and increase much-needed awareness about the widely misunderstood and incurable neurological disease.

“It was the most glorious day. We met so many lovely people, including a young man who is already symptomatic. We went over to say hello then we all danced together,” said Carolyn.

“Everybody loved it, there was so much passion and dedication and my heart just filled. I thought ‘everybody here is dancing for us, for families like mine, and for one another’.


Carolyn with Guy at the dance challenge and, below, with her mum Margaret

Carolyn with Guy at the dance challenge and, below, with her mum Margaret


“Everywhere I looked there were people wearing Scottish Huntington’s Association T-shirts. It filled my heart to know to see so many people supporting families like mine and many others who are affected by this devastating disease.”

Carolyn inherited the faulty gene that causes Huntington’s disease from her late mum, Margaret, whose mental and physical health had been declining for over 10 years before she was diagnosed. Until then, the family knew nothing about Huntington’s or that each child of a person with the disease is at 50/50 risk of developing it too.

The faulty gene causes damage to the brain. Over time, severe symptoms develop, which can lead to loss of ability to walk, talk, swallow and eat.

The complexity of symptoms often means 24-hour care becomes necessary, meaning it is no longer possible to live at home with loved ones.

Carolyn said: “When mum was eventually diagnosed it answered a lot of our questions about how much her health and behaviours had changed. She was an incredible woman and was loved by all of us.

“We took her home and I was privileged to look after her until she passed away.

“That’s what mum wanted and we wanted that for her.

For 12 years, Carolyn poured all her energies into caring for Margaret, pushing thoughts about her own health to the back of her mind.

Then, after her mum passed away five years ago, Carolyn decided it was time to be tested for the faulty gene herself.

“I wanted to get in front of it before any symptoms started,” said Carolyn, who works part-time in a supermarket.

“The test came back positive and we’ve talked about what that means for all of us as a family.

“I have no symptoms but our sons understand what might be ahead. I don’t worry about me nearly as much as I worry about them.

“We were supported by Alan McGill, a Scottish Huntington’s Association HD Specialist who works with families in Ayrshire and Arran. Mum just adored him and it was wonderful to see him taking part in Dance 100. We know Alan is there for us if we need support at any stage.”

Last year Guy and their sons took on the Virtual Special Forces Inverse 360 Challenge, a gruelling 300km trek over 360 hours while carrying a 45kg backpack.

They raised over £4000 through donations from friends, families and work colleagues.

For now, Carolyn is doing her best to stay fit and strong by working out regularly at the gym and eating well. She knows symptoms will develop at some stage, she just doesn’t know when.

So in the meantime, she is staying positive, supporting other Huntington’s families and looking to the future with hope that one day a cure will be found.

To find out more about Huntington’s disease and the services provided by Scottish Huntington’s Association, visit