Scottish Huntington’s Association has appointed Alistair Haw as its Chief Executive Officer, following the retirement of John Eden who has left the organisation after serving 11 years in the post.

Alistair - who has been with the charity for five years in the role of National Care Framework Lead - has been at the forefront of moves to improve the lives of families impacted by Huntington’s disease (HD).

Working closely with families and health and social care professionals, he led the development of the world’s first National Care Framework for Huntington’s Disease.  Backed by the Scottish Government, the Framework has been implemented by NHS Boards and Health and Social Care Partnerships throughout the country, empowering families and delivering new services. It has also attracted international attention from - amongst others - Norway, Australia, USA, New Zealand and Ireland, in addition to being endorsed by the European Huntington Association.

Prior to joining SHA Alistair worked as a political and media advisor at both the UK and Scottish parliaments and Account Director and Devolved Nations Lead at PR agency Kindred. He led award-winning teams as Campaigns and Media Manager, then Head of Media and PR, at Prostate Cancer UK. He is also Company Captain and Trustee of Glasgow 278 (Netherlee) Boys’ Brigade, and has been appointed to the Executive of the Neurological Alliance of Scotland.

He takes up his new role as the HD community continues the search for novel therapies and treatments for families impacted by Huntington’s disease.

Alistair said: “It has been an honour to have worked for SHA for the past five years - meeting and working with HD families, seeking to understand the challenges they face and fighting for solutions, both with them and on their behalf. I am hugely grateful to the Board for putting its faith in me to lead the charity and look forward to working with it, our amazing staff and our inspirational HD family members and supporters at what is an extremely exciting time for the community as new potential treatments appear on the horizon.”

Catherine Martin, Chair of the Board of Trustees at Scottish Huntington’s Association, said: “Many of our families know Alistair through his work to develop the National Care Framework, which has been a huge success for the HD community in Scotland. During a full external recruitment process the Board was greatly excited by the vision Alistair set out for the future of the charity, and we look forward to working with him and all staff and supporters on this in the years ahead.”

Scottish Huntington’s Association is the only charity in Scotland exclusively dedicated to supporting the HD community which it does via a network of HD Specialists, Youth Advisors and a Financial Wellbeing Officers. This support provides a lifeline for families impacted by Huntington’s disease and its complex symptoms, which include mental illness and declining control over movement and thinking processes. Over time the incurable disease can rob people of the ability to walk, talk, eat, drink, make rational decision and care for themselves.

The dreadful toll on families is compounded by the reality that each child of a parent with Huntington’s disease is at 50% risk of inheriting the condition. Many young people therefore grow up seeing the disease alter their parent’s personality and impact their physical and mental health, while knowing that they too may go on to develop symptoms.

To find out more about the National Care Framework for HD and services where you live, visit www.care.hdscotland.org