‘Volunteering inspired me to talk about Huntington’s disease’

Scott Simpson, 30, from Fife, volunteers at the annual SHA Youth Service summer camps. He hopes to increase understanding about Huntington’s disease and inspire more people to become involved in volunteering. Here’s his story:

I was eight or nine when I found out Dad was ill and he passed away when I was 12. I was keen to get tested as soon as I could and I was 18 when I found out that I have the HD gene. I did sort of give up on things after that, I withdrew from the world and didn’t have the motivation to get through college, or for anything else really. 

“Then, when I was 26, Pete from the SHA youth service asked me to volunteer at their youth summer camp. It wasn’t typical of me to do something like that, I feel awkward in social situations, but I’ve been back every year. It’s a great environment for meeting young people from HD families, and finding out more about SHA and the research that’s going on.  

“It really inspired me. I realised I could be doing a lot more and it made me want to try to give back to SHA which is such a support for countless HD families. I regained a bit of the confidence I’d lost during those darker years. I hadn’t told my friends about before that first summer camp – I spoke to them about HD for the first time after I got back. They made me wonder why I tried so hard to keep it secret all those years. Although we don’t talk about it much, it’s not an awkward subject, I know they’re there for me if I need them. 

“I’ve done a bit of fundraising for SHA. I ran a 12K obstacle race and was touched by everyone’s support and generosity. I’m pushing myself to do tougher races, so I’ve found myself a new hobby in the process.  I also play five-a-side football a couple of times a week but my real passion is films. I like to analyse them, exploring the themes, characters and techniques. 

“With two of my friends, we decided to make our own film. It was a bit of a mess in the beginning but after a lot of brainstorming ideas, storyboarding and 3am filming sessions it all started to come together. It’s about a guy who gets jumped, his struggle to deal with the event, and the concept of masculinity. It took about three years from the first conversation to the final version but we’re all pretty happy with the result. We’d like to make another one but it can be hard for us all to find the time nowadays.” 

Hoops fun at this year’s SHA Youth Service summer camp – you can just see Scott in the back row, towards the right

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