The Isle of Man Huntington's Disease Association hosted a two-day health conference last month, this was a massive step in the right direction for the Isle of Man Huntington's community.

The event has set a strong foundation in order to begin paving out the new Huntington's disease pathway on the island. Working together to ensure those affected by Huntington's disease get the right care.

Day one

The first day of the event was a family day. This consisted of attendees having the opportunity to have a private one-to-ones with Specialist Huntington's Disease Advisers, Anita Daly and Theresa Westhead. They were joined by the Isle of Man health and social care departments including Occupational Therapy, Social Security Benefits and Social Work Team, all of which play a part in the patient and family Huntington's journey. There was a successful mindfulness workshop, thus giving the committee an idea for a new support group that will include a mindfulness session or weekend retreat. There were also various stalls from charities offering alternative therapies.


Day two

The second day of the event was an educational seminar for professionals who may or may have worked with people affected by Huntington's. This event on the Isle of Man was long overdue and credit to the Isle of Man charity for organising it with 100 people attending.


The programme for the day was as follows:

  • Theresa Westhead, Specialist Huntington's Disease Adviser - Overview of Huntington's disease
  • Lisa McGrath, Principal Genetics Counsellor - Genetics 
  • Heidi Morris, Neurology Nurse Specialist - IOM Nobles Hospital Huntington's disease and Neurology Department 
  • Alex Fisher, Senior Occupational Therapist - Occupational Therapy
  • Dr Hugh Rickards, Consultant Psychiatrist - Abnormal mental states and behaviours in Huntington's disease
  • Dr Rhys Davies, Consultant Neurologist Walton Hospital - Enroll HD and research


All the speakers were very informative with many people commenting on the professionalism of the Isle of Man Huntington's Disease Association charity and the presentation. A videographer filmed each speaker’s presentation and going forward, this will be a vital training tool for the charity. These videos will also be utalised in healthcare settings to ensure any new staff, or staff that could not attend the conference, do not miss out.


Helen Martin said:

“We are just realising what we have actually achieved, it’s just truly amazing. I am so proud of the hard work and commitment from our small committee. Teamwork makes the dream work, we support and care together”. 


They were lucky enough to be funded by the Manx Lottery Trust which enabled them to hold the event. They also want to say a special thank you to Sentient International Limited for a donation towards merchandise. Free gifts with the Isles of Man Association logo were given to everybody to help raise awareness of Huntington's disease.

Isle of Man Event - Consent - September 2022