“I came to know of Scottish Huntington's Association through a collaborative project to develop an online course for health and social care practitioners that we continue to run each autumn providing vital education about Huntington's disease.  I am so impressed by the way that Scottish Huntington's Association provides meaningful opportunities for families and people with Huntington's disease to be involved in their work and to help shape a better future for families in Scotland and beyond.”

Professor McCabe has worked in the field of dementia studies in both practice and academia for over twenty years, starting her career as a care worker in residential homes for older people. She has been a Senior lecturer in Dementia Studies within the Faculty of Social Sciences since 2003 and contributed to the development of the first online MSc in Dementia Studies programme. Building upon that experience, Professor McCabe later led the development of Huntington’s disease: an enabling approach to supporting families, a ground-breaking undergraduate module delivered in partnership with Scottish Huntington's Association to develop the expertise and skills of healthcare professionals and family carers.

“Through family trustees, like me, the Board has direct access to the expertise of people experiencing what it’s like to live with Huntington’s disease right now, and this is key in driving the charity’s priorities. I see lots of changes ahead for our community as we navigate through the development of treatments and, I hope, excitement as it becomes reality for families. I’m very proud of the international reputation SHA has earned and our exceptional staff who make it happen.”

With a background in clinical research, Dr Short is the youngest of four siblings who each tested positive for the HD gene. Marie has lost her father, her brother and one of her sisters to the disease. Her commitment to volunteering and fundraising for SHA was recognised in 2019 with the presentation of an MBE at Buckingham Palace, an honour she accepted on behalf of all Huntington’s families. In 2023 Marie was appointed to the EHDN Scientific and Bioethics Advisory Committee (SBAC), the European Huntington’s Disease Network (EHDN) body that reviews research submissions, clinical trial protocols and applications for seed funding. Its members are drawn from across Europe and specialise in the fields of research, statistics, science, neurology and psychiatry. Marie has a key responsibility as the only family member representative for Europe.

"Scottish Huntington’s Association is a lifeline for families and I want to make a difference and help create change for Huntington's Disease families. For as long as my health allows, I will continue to support Scottish Huntington's Association and the Huntington's disease community in whatever way I can.”

After testing positive for the gene that causes Huntington's disease shortly after her 40^th birthday, mum-of-three Gillian became one of Scottish Huntington's Association’s busiest fundraisers and volunteer speakers to increase awareness about the disease, with a particular focus on reaching medical, health and social care practitioners in addition to the wider public. Such commitment to the Huntington's disease community was recognised in 2021 at the Scotland’s Champions Awards, hosted by the Daily Record & Sunday Mail, when Gillian was named the nation’s Caring Champion. Since joining the Board, she continues to seize every opportunity to raise awareness while sharing her insights as a health professional dedicated to delivering the highest standard of end-of-life care in the hospice where she works.

“I became interested in Huntington's with the advent of genetic therapies on the horizon and whilst to date there have been many disappointments, I remain hopeful that we are close to meaningful treatments. I came across the Scottish Huntington’s Association in my role as HD Lead in Forth Valley and am impressed by its dedication to all of those affected by the condition, including wider family members and carers. It is an honour to serve on the Board, and I look forward to our future together.”

Dr Tim Soane has worked as a consultant Neurologist in Forth Valley since 2019, having trained in Nottingham, Newcastle, Dundee and Edinburgh. He is the Clinical Lead for Huntington's in the Forth Valley Health Board and runs a joint neurogenetics clinic in Edinburgh in addition to his other clinical roles.

Before studying medicine Tim studied as a scientist and he has a degree in biochemistry and a PhD in molecular biology investigating models of neurodegeneration.