Since 1994 our aim is to provide local families affected by Huntington's with a cuppa, chat and company. People can talk about what is happening to their families knowing that the others there know what they are going through.
The local Specialist Huntington's Disease Adviser, Eve Payler, also attends meetings when she can.
Before Covid, we held monthly carers meetings and bi-monthly branch meetings which have been replaced by online Zoom meetings. We also have social events such as BBQs, pub meals, picnics, and boat and theatre trips some of which are subsidised. We also organise subsidised events to get young people together such as activity days and spa days.
Our past secretary, the late Hugh Marriott wrote: “The Selfish Pigs Guide to Caring” recommended for all carers.
Whatever your connection to the disease, whether at risk, undergoing testing, tested, diagnosed positive or negative, symptomatic, carer, family member, friend or professional you are welcome. Often people feel very alone with this disease and the aim of the group is to meet others in similar situations, feel listened to and supported. The group is focused on the needs of the members and between us we have a wealth of experience to share. No one needs to feel alone.
Please visit our Facebook page to keep up to date with information and events.
We are able to offer welfare grants for household items, school uniforms, starting university, and also grants to enable families to ‘make memories’ e.g. by having a special day out. To find out more please download the grant information sheet.