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Huntington’s is a genetic disease that affects generations of families. Every child born to a parent who has the disease has a 50% chance of inheriting it. The disease affects the body’s nervous system and people lose control of their movement, memory and mood. The disease gets worse over time until people need long-term care. We support people from childhood until the end of life.Ìý

Our specialist youth engagement service ( HDYES) supports children and young people. The team can help with any issue at home or in school. Peer to peer support groups and events allow young people to meet others in similar situations building a support community so no one feels alone.

Our specialist advisers in England and Wales support anyone who needs help at anyÌýstage of their Huntington’s journey. This can be people living with the disease,Ìýpeople at risk of inheriting the disease, family members and carers, childrenÌýand young people. They can advise friends, neighbours, employers and a medicalÌýteam. Our support groups give people the opportunity to connect with others in the community living with Huntington’s disease.

Additionally, we support Health and Social Care professionals through training so they are equipped to correctly support people. Training ranges from monthly webinars for care home staff to one-to-one training and an online training course. Understanding Huntington’s disease makes a difference and can improve quality of life.

Huntington’s disease has no cure, however, the Huntington's Disease Association exists to help build a better life for anyone affected.

Viewers in Scotland and Northern Ireland can find local support and resources atÌýÌýÌý andÌýÌý

I am honoured to present the appeal for the Huntington's Disease Association. Huntington’s disease is a horrendous illness, as it is inherited it can affect generations of families. Families like Charlotte, Chris and Natalie’s.

As a parent, I can only imagine how devastating it must feel to know your child has a 50% chance of inheriting this life-limiting disease.Ìý

The Huntington Disease Association exists to build a better life for anyone affected by Huntington's disease.ÌýTheir services are open to anyone: They offer support to adults with the disease as well as to young people who have become young carers or are preparing for life with the illness ahead after testing positive.ÌýÌýA rare illness can be a lonely illness; the Huntington Disease Association is there to support everyone in the Huntington’sÌýcommunity, makingÌýpeople feel less alone. Although research is ongoing, there is as yet no cure. Your donation could make a world of difference to someone affected by Huntington's disease.Ìý

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Charlotte is a passionate Huntington's Disease Association ambassador, a carer for her mum who is in the middle stages of the condition and Charlotte cared for her nan who sadly passed away from Huntington's disease in 2021. Charlotte recently found out that she is also gene-positive.Ìý

Over the years, Charlotte has been supported by the charity’s Youth Engagement Service - HDYES. Wanting more involvement, she joined a panel of young people called HD Youth Voice who are involved in collaborative projects allowing them to shape how the charity supports young people.Ìý

ÌýElaine, Charlotte’s mum has accessed the charity’s services for a number of years. Elaine receives support from a Huntington’s disease adviser who also helps her find other services including local support groups. The charity also supported her when her mum, Lin (Charlotte’s grandmother) was moved to a care home and the staff were trained in the best way to care for Lin.

Chris is a proud advocate of the Huntington’s Disease Association and he has been supported by the charity for many years. Chris regularly attends local support groups and has a positive relationship with his local Specialist Huntington’s Disease Adviser.

ÌýWhen Chris noticed that he was becoming symptomatic, he contacted the charity and meetings were arranged between Chris’ employers and the charity’s Specialist Advisers. This helped his employer to understand the disease and its symptoms better and they were advised how they could best support Chris to keep him in work for as long as possible. He was also encouraged to attend wellness groups when his adviser noticed he was becoming isolated, these have had a really positive impact on his life.

ÌýChris is now a very active ambassador and does whatever he can to raise awareness of Huntington’s disease. He shares his lived experience with healthcare professionals at the charity’s professional training course and speaks openly about Huntington’s disease.

Natalie and Heather are mother and daughter. Huntington’s disease was passed down through Heather’s mother's side. She has already lost her brother, sister, niece and two nephews to Huntington’s disease. Natalie and her brother both have a 50% chance of inheriting the disease but they have chosen not to be tested.

ÌýAs Heather became more symptomatic she moved into a care home. She spent a year in this home but as her illness progressed, they were not equipped to deal with her complex symptoms. Natalie contacted her local Huntington’s adviser who advised them on a more suitable care home and what medication would be best to help with Heather’s symptoms.Ìý

ÌýThey moved Heather to Dearnevale, a care home that is recommended by the Huntington’s Disease Association. Dearnvale has the charity’s Quality Assured accreditation and they have invested significant time, resources, training and commitment to offer specialist care for people with Huntington’s disease.Ìý