Catherine Martin has been appointed as the new chairperson of the Scottish Huntington’s Association (SHA), the only charity in the country supporting families living with the degenerative brain condition Huntington’s disease (HD).

Catherine (36) is a current board member and has a long standing relationship with the SHA.

She comes from a HD family, her mother had the condition, so had a 50:50 chance of developing the condition herself. Catherine didn’t inherit the faulty gene, but growing up knowing it was a possibility made her very aware of the impact the disease can have.

“I had a very positive experience of HD growing up, we were always open about it and didn’t hide anything from anyone. It wasn’t until I was teenager and met other HD families that I realised that we were unusual in that respect. For many families they still saw the condition as a stigma, something to be hidden away and not talked about,” she said.

“When I realised this was the case for most families I became determined to become an advocate for the condition, to try and remove the secrecy around it and improve understanding of what the disease is and the affect it can have on not just the person living with the condition but their whole family.”

Her family has been involved with the SHA since it founded just over 25 years ago and she ended up working for the charity for a spell. She is also heavily involved in the HD youth support service around the world and is a prominent figure in the European Huntington’s Disease Network.

Catherine hopes her time at the helm of the charity will see further progress in finding an effective treatment for HD.

“There are some big advances in finding a treatment for the condition and we have to think about how we adapt as an organisation to this. I would also like to see greater equality of services for HD families across the country during my term as chair. HD is a complex condition and we need to be thinking about how we can use existing resources more creatively,” she added.

Catherine lives in Kilsyth and is a Quality Improvement Officer with Aberlour, Scotland’s children’s charity based in Stirling.