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 three moving personal story at last year's AGM, and by popular request for more lived experiences, this year we are delighted to have another 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 Anne Rosser
Research update
Anne, Professor of Clinical Neuroscience, Division of Psychological Medicine and Clinical Neurosciences at Cardiff University, will be providing an overview of current and upcoming Huntington's disease research.
Uruj Anjam
Huntington's disease and relationships
Uruj Anjum, Psychotherapist, Lecturer, Supervisor, Founder of Saiyna Therapy and Donna-Maria Dodson, Psychotherapeutic Counsellor and Supervisor will be exploring the emotional impact of Huntington's disease when relationships change.
Cara-Leigh Lloyd
A personal experience of Huntington's
Cara is a passionate ambassador for the Huntington’s Disease Association. Huntington’s disease has been part of her life since she was 14 when her dad was first diagnosed. The Huntington’s Disease Association supported her dad through the different stages of the disease and also supported Cara through her own testing journey. Unfortunately, Cara found out through a hospital leaflet and wants to ensure that others don’t find out in the same way. She does this by supporting the charity in raising awareness where she can. She will be sharing her personal story about her life, the support she got and the friendships she has made.
Hana Blackley
A personal experience of Huntington's
Hana has been involved with the Huntington’s Disease Association for over 20 years. She first connected to the charity when she was just 16 due to her late dad being affected by Huntington’s disease. Hana has been an active member of the charity by fundraising from a young age and for the last six years, has been on the board for her local branch. Hana will be sharing her journey navigating Huntington’s disease, the support she has received from the charity and her impactful work volunteering with the Dorset Branch.
Susan Fletcher
A personal experience of Huntington's
Susan is a carer and ex-teacher from Norfolk. She saw the ripple effect of Huntington’s disease sweep through three generations of her family during one doctor's appointment with her mother-in-law. She had to break the news to her father-in-law, husband, husband's brother and decide how she would open the conversation with her young daughter. Susan will share her journey, how she introduced her young daughter to Huntington’s, and how she cared for her husband before he went into a home. She wants to emphasise the positive life that can be made and how she and her husband still do, even though he is now sadly bed-bound and incontinent. She hopes her talk will uplift and empower others.
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.
A huge thank you to our sponsors, uniQure and Skyhawk Therapeutics for sponsoring the event and making this weekend possible.
Huntington's disease Community Conference and AGM 2026
7 November 2026 - 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.