Scottish Huntington’s Association Impact and Engagement Fund

The Scottish Huntington’s Association Impact and Engagement Fund launched in 2024. It has been made possible through a generous legacy donation in support of the charity’s commitment to supporting research about Huntington’s disease through the provision of Impact and Engagement funding for academic and practitioner researchers and students working in Scotland.

What we’re looking for:

The charity is keen to support impact and engagement activities that are innovative, effective and high-quality; that disseminate new knowledge; and that can be demonstrated to be of benefit to the Huntington’s community in Scotland and beyond. The Huntington’s community includes anyone who is affected by Huntington’s disease, including those who support and care for Huntington’s families.

We support activities that help to ensure findings and lessons from research are shared widely. Support will be provided for impact from research across any discipline with no restriction as to methodology but excluding large scale drug trials and observational studies.

Proposals should be for a distinct piece of impact or engagement activity with an identifiable outcome of its own.

Who can apply?

Academic and practitioner researchers and students at any career stage, who have produced or are carrying out the research in question. Applicants must be working or studying in Scotland at a university, further education college, or health or social care setting (third sector organisation, statutory or private organisation). Applicants’ employment contract or supervisory arrangements for students must extend for at least two months beyond the end of the activity for which funding is requested.

Activities and resources eligible for funding:

All activities must involve engagement with the Huntington’s community in Scotland and share research findings with a wider non-academic audience in an accessible manner way. This might include, but is not limited to:

• Travel, accommodation, subsistence and fees for conference or seminar attendance at Scottish, UK or international level
• Knowledge exchange, public engagement and impact activities
• Developing materials such as film, audio or printed materials
• Delivery of education or training workshops
• Creation of a website or digital resource.

A maximum of £2000 is available on the condition that all costs are fully justified.

Activities and resources ineligible for funding:

Activities relating to large scale drug trials and observational studies, research activities such as recruitment of participants and data collection and analysis.

You are ineligible to apply if you have received funding from this fund in the past 24 months.

Funding cannot be used to fund salaries, honorariums, scholarships, equipment costs, manuscript preparation and publication, indirect overhead costs such as desk fees, or insurance.

Assessment

Applications will be assessed by reviewers appointed by the Board of Trustees of Scottish Huntington’s Association who may approach specialists to act as peer reviewers as necessary. Criteria for assessment will include:

• Quality and significance of the proposed activity
• Expected outcomes and capacity to generate benefit for the Huntington’s community
• Suitability of the methodology or approach selected
• Feasibility of the timescales and scope proposed
• Match between the applicant and the activity proposed
• Ability to demonstrate the effectiveness of the activity
• Appropriateness of the level of funding requested

If assessors require additional information they will contact applicants during the review process.

Deadlines for 2024 applications

The application portal remains open at all times and applications will be considered in October and April each year with deadlines as set out below. Projects should be scheduled to begin with the results deadline in mind; awards must be taken up and work initiated within 6 months of the date of the award. Retroactive applications will not be accepted.

Successful applicants and their organisations will be informed together as promptly as possible.

The period of award should be clearly specified and may be up to 9 months.

Conditions of award

All applications require institutional/organisational sign-off by a person with authority to sign on behalf of an institution in the relevant circumstances.

Student applicants must have the formal approval of their supervisor, who must also co-sign the end of award report.

Any ethical approvals for research work undertaken must be complete and confirmed by applicants and supervisor/manager at the time of application.

Funds provided by Scottish Huntington’s Association under this scheme may be used only for the purposes specified and may not be used later than the end-date specified in the application. All funded activities must take place within the period of the award.

Funds will be paid to the applicant’s institution or employer only after the applicant and their institution have formally accepted the award and issued an invoice for payment by Scottish Huntington’s Association. We will endeavour to make payment as promptly as possible.

Only one application from the same applicant can be considered at any one time.

If an application is rejected, it may be revised and resubmitted at a subsequent submission date if the applicant remains eligible. Scottish Huntington’s Association regrets that it is not possible to provide feedback on unsuccessful applications.

An end of award report is a condition of funding and should be completed within 6 weeks of the end of the award: for students, this must be co-signed by a supervisor. An end of award statement of expenditure is also required for all award holders: this must be completed by an authorised signatory at the award holder’s institution/employer. Any unused funds should be returned to Scottish Huntington’s Association.

Award holders should notify Scottish Huntington’s Association of any change in their circumstances. Variations to the original scope and date of the award will be considered only in exceptional circumstances and should be discussed with the Scottish Huntington’s Association at the earliest possible stage.

To apply

All applications should be submitted through our digital application form.

For further information, please contact Professor Louise McCabe at louise.mccabe@stir.ac.uk

“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.

"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.

“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 recognised at national and international levels for its expertise in the care and support of people whose lives are impacted by Huntington’s disease.

The charity is actively involved in helping to ensure strong participation in global research activities – a key element of our five year Standing Tall strategy – in addition to engaging with studies taking place at home.

We are keen to hear about your research projects and can provide support within academic and practice settings a number of ways.  This includes:

• • Offering insight into current issues affecting families with Huntington’s disease in Scotland where research is needed
  • Supporting recruitment into current studies by sharing information about your research in our newsletter and across our digital channels to reach families and practitioners across Scotland
  • Enabling co-production approaches by connecting researchers with family members who are interested in collaborating in research
  • Linking in to our extensive professional networks in Scotland, across the UK and internationally
  • Promotion of research findings and outcomes across our communication and marketing platforms and, where appropriate, through specialist and mainstream media
  • Impact and Engagement Grant funding support (see Research home page).

Gillian McNab

Speaking at NDN Annual Conference 2022

Catherine Martin

Speaking about her contributions to research 2024

Projects supported by Scottish Huntington's Association

‘Let’s talk about Huntington’s disease’ – University of Aberdeen 2019

Exploring the complexities of safe postural management for people in Scotland with a diagnosis of Huntington’s disease – Queen Margaret University 2021

What is the role of  proprioceptive and tactile feedback on functional movement in Huntington’s disease? – Queen Margaret University 2022

“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.