Scottish Huntington’s Association has announced a new fund to support the impact of research into ways to improve the lives of families impacted by Huntington’s disease in Scotland and beyond.

The charity’s Impact and Engagement Fund has been made possible through a generous legacy donation in support of the charity’s commitment to sharing knowledge about Huntington’s disease and the services and care that individuals and families need. It is open to academic and practitioner researchers across all disciplines and at any career stage who are studying or working in an associated education, healthcare or third sector setting in Scotland.

Grants of up to £2000 will be awarded to each successful applicant to help promote findings from innovative and high quality studies through, for example, workshops, training, or the development of creative and engaging outputs to share research findings.

“We are excited to offer this support to researchers and students across Scotland to share their work more widely, to engage with the Huntington’s community and to increase the impact of their research,” said Professor Louise McCabe, Chair of the Scottish Huntington’s Association Board Research Sub-Group and Professor in Dementia Studies at University of Stirling.

Huntington’s disease is caused by an inherited faulty gene that damages the brain over time. People with the disease can eventually lose the ability to walk, talk, eat, drink and care for themselves, requiring specialist support from those who understand the condition. The disease is genetic, meaning it is passed down from one generation to the next. It therefore impacts entire families over generations rather than individuals alone. Anyone with a parent who has Huntington’s has a 50% risk of inheriting the condition from them.

Although worldwide research is taking place there is, at present, no way to slow or stop the progression of Huntington’s. However many of its symptoms can be managed with a combination of medication, alternative therapies and appropriate support from specialist services provided by Scottish Huntington’s Association and its health, social care and third sector partners.

The Scottish Huntington’s Association Board Research Sub-Group was formed in 2023 to raise the charity’s profile as a partner in research by developing national and international networks in the research community, ensuring that relevant research is communicated effectively, providing guidance and information to families who want to get involved in research, and disseminating past and current research projects in which the charity has been involved.

In addition to Professor Louise McCabe, trustees on the sub-group include palliative care nurse and Huntington’s disease ambassador Gillian McNab, Dr Marie Short MBE who also sits on the European Huntington’s Disease Network Scientific and Bioethics Advisory Committee (SBAC), and Dr Tim Soane, Consultant Neurologist and HD Clinical Lead for NHS Forth Valley.

The launch of the Impact and Engagement Fund builds on the charity’s long-standing commitment to education and training for academics and healthcare professionals involved in the care of people impacted by Huntington’s disease. This includes the groundbreaking 12-week programme ‘Huntington’s disease: an enabling approach to supporting families’ delivered in partnership with University of Stirling for more than 10 years. The programme aims to increase understanding about the disease and its physical, psychological, emotional and social impacts on individuals, families, loved ones and carers.

Alistair Haw, Chief Executive of Scottish Huntington’s Association, said:

“This latest development is a significant step forward in our charity’s work to advance the cause of Huntington’s families throughout Scotland and beyond. We are hugely grateful to the generous donors and the expertise of our Trustees in making this all possible and look forward to reviewing the outcomes of these important research projects in the fullness of time.”

Visit https://hdscotland.org/research/ for more information, including award criteria and how to apply.