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 their stories, projects and Huntington's disease updates.
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
Sarah is a Clinical Psychologist who has worked closely with the charity for a number of years. 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 is also a Lecturer in Clinical Psychology and is hosting a selection of lighting talks from her degree students.
- Tierney Tindall (Trainee Clinical Psychologist) – Experiences of irritability within Huntington's
- Paige Lindo (Trainee Clinical Psychologist) – Understanding how Huntington's affects the wellbeing and relationships of people with the disease, their families and caregivers
- Catherine Lyon (Trustee) – Experiences and perceptions of affected individuals, families, carers and healthcare professionals regarding end-of-life planning in Huntington's disease
- Suzanne Buswell (Research Assistant) – Exploring the experiences of Acceptance and Commitment Therapy for caregivers to those with Huntington's disease
Chris Leak
A personal experience of Huntington's
Chris is a proud advocate of the Huntington’s Disease Association. Despite dealing with the implications of his progressive symptoms, Chris has thrown himself into raising awareness and helping with clinical research to help develop new treatments for Huntington's. Chris has been supported by the Huntington’s Disease Association for a number of years and is going to share his personal experience with us.
Rachel Taylor
Practical tips for managing symptoms of Huntington's disease
Rachel trained as a nurse over 30 years ago and has worked in a variety of clinical settings including acute hospital, hospice and community. Together with Professor Sarah Tabrizi, she set up the Huntington's disease clinic at The National Hospital for Neurology and Neurosurgery in London in 2003. She left The National Hospital for family reasons in 2017 to join her partner working in Tanzania. However when the opportunity came up to return to the Huntington's disease service in late 2023, she jumped at the chance to be backing working with such an incredible group of colleagues, patients and families.
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.
Sunday workshops
We 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. Find out more below.
Are you attending one of our workshops?
Awareness, Support