This year, we are fortunate enough to be joined by some inspiring faces from the Huntington's community.
We would like to introduce you to each of our speakers and their presentation topics for the event. The start of the event is the annual general meeting. This will allow you to hear updates about the work of the charity, charity finances, appointing new trustees and approving auditors.
Following this we have a selection of keynote speakers who will be sharing projects and Huntington's disease updates.
After a moving personal story at last year's AGM, and by popular request for more lived experiences, this year we are delighted to have three people from the community giving their personal perspectives on life affected by Huntington's disease.
Cath Stanley
The work of the Huntington's Disease Association
Cath Stanley is the Chief Executive of the Huntington’s Disease Association. She provides strategic direction for the charity, whose main area of work is providing support to families affected by Huntington’s disease, and professionals supporting them. Her background is in nursing and her area of expertise was palliative care. Cath has several papers published on a variety of aspects of Huntington’s disease. She is also a trustee of the Neurological Alliance. Cath will be giving a charity update and discussing plans for the future.
Professor Hugh Rickards
The work of the Huntington's Disease Association
Hugh is the Chair of the Huntington’s Disease Association Board of Trustees. Hugh has been a part of the Huntington’s community for over 30 years and works as a Neuropsychiatrist with a real interest in the cognitive and psychiatric side of the disease. He currently looks after 350 patients with Huntington's and advocates for patients and families. Hugh will provide us with charity updates.
Professor Ed Wild
Research update: a light at the end of the tunnel
Ed Wild is a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery.
Ed is well known within the Huntington's community for his outstanding experience in neurology, his dedication to research and for founding the well-known channel, HDBuzz which provides the community with accessible and understandable Huntington's disease and research news. The work he does has a real impact on those affected by Huntington's disease.
Dr Sarah Gunn
MSC research lightning talks
Dr Sarah Gunn is a Clinical Psychologist and co-lead for the Leicestershire Huntington's disease Network. She has offered a huge amount of support to the community through her helpful blogs, webinars on psychological therapies, Q&As and Acceptance and Commitment Therapy courses that she has run.
Sarah will be talking about the study of mental healthcare experiences for people affected by Huntington's disease. She will be joined by her students, providing short updates on their current research.
- Catherine Lyon, on her interview study regarding end-of-life care experiences for families.
- Nicola Dilley, on experiences of living with an intermediate allele or reduced penetrance result from Huntington's disease predictive testing.
- Karolina Harris, on views of assisted dying among people affected by Huntington's.
- Rob Johal, on the impacts of Huntington's disease on sexual identity.
- Paige Lindo, on the impacts of Huntington's disease on family relationships.
David Stephenson
Policy and public affairs update
David has been the Head of Policy and Public Affairs at the Huntington’s Disease Association since May 2024. He leads the charity’s work to influence the government and NHS decision makers. David has a background in mental health policy and practice, having worked on the policy and campaigns team at Mind, at the Law Society as its Mental Health Policy Adviser, and on an NHS community mental health team.
Hannah Dickson
A personal experience of Huntington's
Hannah’s journey with Huntington’s disease began in 2017 when her husband was diagnosed. As a carer and mother to two children who are at risk of inheriting the condition, Hannah has been forced to face the realities of Huntington’s which have led to her becomming a Huntington’s Ambassador. She has bravely shared her story of how she has navigated her husband’s Huntington’s disease. From diagnosis to speaking with their children, to caring, to professional interventions. In recognition of her experience, Hannah was featured on BBC News as part of an exhibition highlighting the lives of carers.
At this year’s AGM, Hannah will reflect on how the Huntington’s Disease Association and the Youth Engagement Service has supported her family throughout their journey. She will share the lessons she’s learned, the support systems that have made a difference, and practical guidance for other carers and parents.
Jenny McArthur
A personal experience of Huntington's
Jenny was diagnosed with Huntington’s disease in 2023. Inspired by a moving talk from fellow ambassador Chris at last year’s AGM, she became a Huntington’s Ambassador in 2024. Since then, she has shared her story to raise awareness of Huntington’s and the wide range of support she gets from the charity that she refers to as the “HDA Hug”.
Jenny will be sharing her Huntington’s story and the emotional highs and lows, the trial and error of navigating symptoms and medications and the strategies that have helped her live a more fulfilling life. Jenny speaks openly about what she calls the "Huntington’s mask", the two sides of her personality. The Jenny she knows, and the part of her shaped by the disease. She will also discuss how mental health support, particularly Acceptance and Commitment Therapy (ACT), has played a vital role in her wellbeing.
Lisa Kelly
A personal experience of Huntington's
Lisa’s daughter, Becky, was diagnosed with Juvenile Huntington’s disease when she was 20 years old and six months pregnant. Becky passed away in 2021 around the same time as her two half sisters who were all born to the same father. Lisa and her daughter were unaware that he carried the Huntington’s gene. An inspiration to many, Lisa now raises Becky’s son, who is now at risk of Huntington’s disease. Lisa does what she can to raise awareness of Huntington’s and recently abseiled down Liverpool Cathedral.
Lisa will be sharing her story, from the shock of finding out about Huntington’s disease to caring for her daughter for 13 years and managing her end-of-life care.
About the community conference and AGM
This year's conference will take place across two days with the AGM and community conference taking place on the Saturday and interactive workshops taking place on the Sunday. There is the option to join for one or both days and also the option for an overnight stay.
Huntington's disease Community Conference and AGM 2025
1 November 2025 - 10:00am
For families, For professionals, In person
Sunday workshops
We will have a number of interactive workshops taking place on the Sunday. Each workshop will take place twice so there will be the opportunity to choose two workshops to join. More information about the workshops will be announced soon.