We have lots of information about Huntington's disease and can provide expert comments for journalists and other media professionals.
Contact our media team:
Email: comms@hda.org.uk
Tel: 0151 332 2769 or 07841 037625
What is Huntington's disease?
Huntington’s disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that coordinate your body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally until the individual becomes dependent on the help of others. Symptoms include motor (movement), mental health (for example mood) and cognitive (for example learning and thinking) disturbances, which in the majority of cases appear in mid-adult life.
Huntington’s disease affects around 8,000 people in the UK or 1 in 10,000 people. Up to 32,000 people in the UK live at risk of developing the disease. It can start at any age, but symptoms usually first appear between ages 30 and 50. Symptoms gradually get worse over 10 to 25 years until the person dies. Every child conceived naturally to a parent who has the faulty Huntingtin gene that leads to Huntington’s disease has a 50% chance of inheriting it.
Currently, there is no cure, although drugs and therapies have been developed to help manage the symptoms.
About Huntington’s Disease Association
The Huntington’s Disease Association provides various services to people who are affected by Huntington’s disease across England and Wales. These services include –
- Specialist advisory service
- Online support via social channels and website
- Funding of selected research studies and projects
- Local branches and support groups
- Events and activities for families and people affected by the disease
- Training and events for professionals
Together we will build a better life for anyone affected by Huntington's disease.
Case studies and spokespeople for interview
We know real life stories can bring news to life. Contact us to put your story into context and organise interviews with people who are affected by Huntington's disease, their families and carers.
We have a group of amazing ambassadors who are willing to share their story.