“HD has impacted at least three generations of my family. I have seen the tremendously positive impact SHA can provide in support of those affected by HD first hand, and also in trying to enhance the understanding of HD with the wider public. I’d like to bring my finance background and family experience to my role as a Trustee to further raise understanding of HD and ensure necessary services are available to all that require them.”

Aarran has worked in senior finance and commercial roles in the UK and internationally for more than 30 years. In addition to his specialist finance knowledge, Aarran brings personal insights and experiences of HD and its impacts on family members.

“Huntington’s disease was not known in my family until 2005 when my younger sister was diagnosed.  I did some fundraising after I retired in 2008 then volunteered at National Office where I saw how much the funds raised were appreciated. I have also seen the support provided to my sister through HD Specialists.  I have been fortunate to have had a negative test.  In the past 15 years I have raised funds annually for Scottish Huntington’s Association and the condition is at least known in my community. I volunteered for the Board in order to maintain my link with the charity and I hope my experience can be of use.”

Margaret qualified as a Chartered Accountant in 1969 and has worked in professional CA offices, with a short career gap for children.  Since 2011 she has worked part-time for a firm of solicitors in Paisley.

"Since its foundation, Scottish Huntingtons Association has made a real and increasing difference to people with Huntington’s disease and their families, but we know that there is still more we can do. It’s a privilege to join such a committed group of people in this important work, and I am keen to contribute in whatever way I can."

Professor Milne has a wealth of experience in strategy, governance and leadership having held a number of senior roles at the University of St Andrews. These include, until recently, Master of the United College and Deputy Principal with responsibility for forward planning in relation to the University’s intellectual portfolio, academic appointments, space management and resource allocation. On the University Senate, Professor Milne was instrumental in ensuring the highest standards of academic governance, learning and teaching, research and student experience, and was also a member of Court, the University’s governing body. Previous leadership roles at St Andrews further include Dean of Arts and Vice-Principal for Education. Prior to returning to her alma mater in 1996, Professor Milne held positions with HM Diplomatic Service in London and East Berlin, University of Auckland, New Zealand, and Aston University, Birmingham.

“I came to know of SHA 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 HD.  I am so impressed by the way that SHA provides meaningful opportunities for families and people with HD 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 SHA 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 HD families. With Trustees Carolyn Craig and Dina De Sousa, Marie sits on SHA’s Welfare Grant and Short Breaks Committee and is the co-founder of My Zen Run, a virtual fundraising event which by its third year had raised more than £20,000 for the charity.

“I’m determined to try to remove the stigma and improve understanding, including the impact Huntington’s disease has on the person and their whole family. I would like to see greater equality of services for families across the country.”  

With extensive professional experience of the third sector, Catherine’s career includes client facing roles in addition to senior leadership positions, including Executive Director of the Huntington’s Disease Youth Organisation (HDYO). As a leading advocate at global level for HD families, she is committed to building support for improved specialist services in Scotland and beyond. Her involvement with SHA spans 25 years, as a family carer, youth advisor and Trustee. She brings to the Board her professional knowledge and personal insights about rare disease and patient advocacy, supporting young people and families, project management, and developing clinical practice models. Catherine – whose late mother had Huntington’s disease – tested negative for the gene that leads to the disease.

“Huntington’s disease is a condition with symptoms that can vary widely from person to person. As a result health and social care staff can often be perplexed by the disease, meaning care and support can suffer. I will continue to work to improve symptom management in those attending my clinic as well as striving to reduce stigma and promote education about Huntington’s disease.”

Dr Gordon was a key member of the advisory groups that contributed to the development of the National Care Framework for Huntington’s Disease and its localised versions. She has over a decade of clinical experience working with people who have HD, people who are at risk of developing HD, and their loved ones. She has shared her work on population data and predictive statistics at international level. Dr Gordon also supports the work of SHA as a volunteer fundraiser and has raised several thousand pounds by running marathons and ultramarathons.

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

After testing positive for the gene that causes HD shortly after her 40^th birthday, mum-of-three Gillian became one of SHA’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 HD 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.

“My life partner of 35 years was diagnosed as being positive for Huntington’s disease in 2008. Since then my partner, myself and our three children have been afforded exceptional support from Fife HD Specialists and staff who have steered us through some difficult times. I believe, as has been said, that “Scotland is the best place to live with Huntington’s disease “. Now that I am semi-retired I thought it was time to give something back by supporting families such as mine and doing my level best to spread awareness in Scotland and beyond.”  
    

Derek brings a range of skills and experience to the Scottish Huntington’s Association Board of Trustees having enjoyed a long career in procurement, supply chain and strategic sourcing in a variety of manufacturing environments including in Vitro Diagnostics. Since stepping back from his career, Derek now shares his 30+ years of experience in supply chain and contract management as a part-time freelance consultant for small business enterprises.