Meet Rebecca, our new volunteer Youth Ambassador!

The 19-year-old from Edinburgh, who is studying a radio and podcasting course at college, is sharing her experiences to provide peer support to other young people and raise awareness about Huntington’s disease.

“My mum Lisa was diagnosed with Huntington’s disease when I was about 13 – I’d never heard of it before then so it was a lot to take in,” said Rebecca.

“A short time after, I began to meet up with Pete, my Scottish Huntington’s Association Youth Advisor. He was the first person I felt I could really talk to. Mum’s only 38 and we’re very close but when I was younger I’d get a bit embarrassed when we went out together. Pete explained why Mum’s movements and coordination were changing and because I understand it more, I have a much better relationship with Mum.

“Because the disease takes a lot out of her, Mum takes a bit longer to do things and she does need my help. I don’t want to upset her by talking about what’s worrying me, and even though my friends know Mum has Huntington’s disease, it’s not something we speak about a lot. That’s why having Pete there for support is so important. I can talk to him about what’s happening in a way that I won’t with anyone else.

“The Youth Service has been a big help in other ways too. For example, it runs a bursary scheme for young people to support their education and employability. I applied and was successful, which meant I was able to buy a laptop for college and put something towards travel expenses.

“I didn’t go to the Youth Service activity sessions when I was younger but with Pete’s encouragement I went for the first time to one of their days out in Edinburgh. I really enjoyed myself, it was great to meet people my own age and I plan to go again.

“Now I’m ready to take that next step by volunteering as a Scottish Huntington’s Association Youth Ambassador. Raising awareness about Huntington’s disease is very important to me. Too many people in my life, including adults, have never heard of it and I’m looking forward to helping to change that.”

We’re delighted to have you on the team Rebecca – thank you!