Huntington's Disease Association

Image for Huntington's Disease AssociationNot currently available on BBC iPlayer

Duration: 10 minutes

EastEnders actor Shane Richie makes an appeal to raise funds for the Huntington's Disease Association, a charity for which Shane is patron. Shane became involved in 2004, when EastEnders featured a character who was suffering from the incurable and degenerative illness. A viewer suffering from the disease wrote to Shane personally, and he has since met her and they have become family friends. Shane now works to do all he can to help people affected by this hereditary neurological disorder, which slowly causes dementia and difficulties with speaking, swallowing and walking.

The film features Richard, who is in the middle stages of the disease; and Matt, who lost his father to the disease and knows that he too carries the gene. Matt talks about how, with the help of the Huntington's Disease Association, he is coming to terms with the fact he will also start showing symptoms at some point in the future.

  • Donate online now

    Donate online now

    You can donate to the Huntington's Disease Association by going to the website or by calling 0151 331 5444.

    Or if you’d like to post a donation please make your cheque payable to the Huntington's Disease Association, suite 24, Liverpool Science Park IC1, 131, Mount Pleasant, Liverpool, L3 5TF.

    Huntington's Disease Association
  • The Huntington’s Disease Association

    The Huntington’s Disease Association

    The Huntington’s Disease Association (HDA) is a charity that exists to support people affected by Huntington’s disease and their families. Huntington’s disease is progressive and affects people’s mobility, speech and swallowing, mental health and thinking processes. It is a rare illness and is hereditary, every child born to a parent who carries the gene for Huntington’s disease is at 50% risk of inheriting the disease. So children often grow up watching their parent with the illness knowing that this may be their fate as well.

    The HDA provides care and support for people through its regional care advisory service, experts in the disease who can ensure that families and individuals get the help that they need to cope with this complex illness. The HDA also provides summer camps for children, to enable them to get away and have fun, whilst being able to meet with other children in a similar situation.

    There is also an annual summer camp for families affected by the very rare juvenile form of the illness.
    In addition to this the HDA runs a series of local support groups. These dynamic groups offer the chance for families to meet with others who face the illness and share experiences, helping reduce the feelings of isolation.

    The Huntington’s Disease Association
  • Shane Richie

    Shane Richie

    In 2004 EastEnders featured a storyline in which a character, David Collins, was suffering from Huntington's disease. Everyone in the cast and crew was very moved by the storyline and we received a lot of mail.

    The mother of one young lady, called Laura, who was suffering from the disease wrote to me personally. I was so touched by her letter that I decided to go to Laura’s home in Yorkshire and surprise her. When I met her she was in the middle stages of the disease and had difficulties speaking and walking. Yet she was also one of the most lovely and cheerful people I had ever met. I went up to visit Laura on a few more occasions and she is now a close friend of the family. Sadly last time I saw her her health had greatly deteriorated and I could see that things had become a real struggle for her.

    Meeting Laura inspired me to become a patron of The Huntington's Disease Association, a charity that does brilliant work providing practical and emotional support to sufferers and their families. Huntington's disease is an awful illness and because it's quite rare, sufferers can feel very alone. I've seen the difference the charity can make to people like Laura, and that's why I want to do all I can to help them. You can help too by donating to this appeal.

  • Matt & Norma

    Matt & Norma

    At the age of 40, Norma’s husband John was diagnosed with Huntington’s Disease, a neurological disorder that affects around 8,000 people in the UK. As the disease progressed John developed difficulties speaking, swallowing and walking.

    There is currently no cure for Huntington’s disease and full-time care is required in its later stages. Norma gave up work, and with her son Matt’s help, looked after John until he died, aged 54.
    Huntington’s Disease is caused by a faulty gene that can be passed down through the generations. Every child of a person with the disease has a fifty per cent chance of inheriting the gene.

    At 19, Matt decided to be tested to see whether he too carried the faulty Huntington’s Disease gene. He was supported by The Huntington’s Disease Association who help equip young people with the information and guidance they need.

    Matt tested positive for the faulty gene.

    Matt said “After you’ve had your results, it’s really quite a surreal experience. Your whole life changes at that point and it’s almost too much to comprehend.”

    The charity runs support groups which give sufferers and their families a place to share their experiences. This support has helped Matt remain positive, and now four years after his diagnosis Matt is determined to live life to the full. This year he is running 15 marathons around the world to raise money for the charity.

    Matt acknowledges that Huntington’s Disease is at the back of his mind every day, but for both him and his mother Norma the charity provides a vital support. As Norma explains, “Knowing the charity is there is so reassuring - they’re just brilliant.”

  • Richard


    Fifty year old Richard lives by himself in Birmingham. His mother died of Huntington’s Disease and he first started showing symptoms 15 years ago. He now experiences speech difficulties, mood swings and jerky body movements and has been forced to give up his job as a shop assistant.

    “My speech is getting more difficult for people to understand, it takes me a little bit more time to actually say words correctly. I’ve got more jerks and twitches in my mouth and body movements.”

    The Huntington’s Disease Association is there to help people like Richard who are living with the disease. It has 20 specialist care advisors who visit sufferers and their families at home to offer practical and emotional support. Richard’s support worker Jackie has been visiting Richard since his diagnosis.

    “I think the world would be very frightening if this charity wasn’t there. It helped me cope with my life. I know when I do need some help that she’ll be there to give it to me.”


Shane Richie
Executive Producer
Lisa Ausden


BBC © 2014 The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.

Added. Check out your playlist Dismiss