"We’re starting to see incredible scientific discoveries that we only know about because so many families are taking part in research. It is entirely possible that there are people walking around with gene therapy in their nervous system and that one of those people is experiencing the effects in their body of the first effective treatment for Huntington’s disease."

Professor Ed Wild, Associate Director of University College London Huntington’s Disease Centre and Editor in Chief of HD Buzz


Scottish Huntington’s Association is committed to deepening and expanding its focus on supporting research at both national and international levels as outlined in Standing Tall: A Strategy for Growth 2023 – 2028.

In addition to strengthening our relationships with researchers through the work of the Research sub-committee, providing support, creating opportunities and sharing its expertise, the charity will:

  • Develop strong links with all relevant research agencies to ensure the voices of Huntington’s families are heard
  • Ensure our staff and Huntington’s families are kept informed of research and clinical trial opportunities, and are supported to engage within them
  • Be prepared to campaign for new treatments to be accepted for use on NHS Scotland as and when licenced
  • Develop evidence on the saving to funders of providing HD Specialist services, in terms of preventing crisis situations

Ways we can support your research

How our families can get involved

Research news and Resources

Impact Grant opportunities

Projects supported by Scottish Huntington's association

What our researchers and families say

Research sub-committee members

The Scottish Huntington’s Association Research Sub-Group aims to raise the profile of Scottish Huntington’s Association and establish it as a partner in research through the following activities:


  • Developing national and international networks within the research community to ensure SHA is represented in relevant forums.
  • Ensuring that relevant current research activities and breakthroughs are communicated effectively by Scottish Huntington’s Association.
  • Providing information and guidance for families who want to get involved in research.
  • Sharing experiences of family members and staff who have been involved research.
  • Disseminating past and current research projects in which Scottish Huntington’s Association has been involved.
  • Making recommendations to the Board of Trustees on how sub-group budget will be spent while ensuring that robust processes are in place for the awarding of funds to external organisations and individuals.

Professor Lorna Milne

Professor Louise McCabe

Chair of commitee

Gillian Mcnab

Dr Marie Short MBE

Trustees of the Scottish Huntington’s Association Board, including a minimum of two family members. At least one Trustee should have experience of research, either of conducting research or bring involved as a research participant.

The Research Sub-Group is a sub-group of the Board of Trustees and reports to the Board. It has delegated responsibility to take decisions and request their implementation by Scottish Huntington's Association management where its expertise is sufficient to do so with authority, or where prompt action is required. Decisions with multiple or major implications are referred to the full Board for discussion and approval. The Sub-Group does not have delegated budgetary authority.