Carol Dutton
Bristol, Gloucestershire
Support in the South West of England
We are here to support you whether you are looking for peer support or advice from a professional. Below you can find out more about our Specialist Huntington's Disease Advisers and local branch and support groups.
Specialist Huntington's Disease Advisers
Our specialist advisers are experienced and compassionate care management professionals.
They support anyone who needs their help at any stage of the Huntington’s journey. They can help people living with the disease, people at risk of inheriting the disease, family members and carers, and children or young people. They can even advise friends, neighbours, employers and your medical team.
Our Specialist Huntington’s Disease Advisers can help by:
- providing a listening ear, advice and emotional support
- delivering our confidential telephone helpline service
- coordinating support with medical, health and social care professionals
- making referrals into specialist Huntington’s disease clinics
- advocating for the person with Huntington’s disease to get the best support
- organising and attending local support networks and carers’ group meetings
- providing information resources on symptoms and how to manage them
- connecting younger family members with our Youth Engagement Service - HDYES
- giving support for sensitive end-of-life care
- educating medical, health and social care professionals
Justine Barkas
Cornwall, Devon, Guernsey, Isles of Scilly, Jersey
Tiffany Stevenson
Bath, Somerset, Weston Super Mare, Wiltshire
Jack Crockford
Youth Worker (Cornwall, Devon, Dorset, Somerset, Wiltshire)
Branch and support groups
You can click on each branch and support group to find out more about the groups and where they meet. If you can't see one in your area and you are thinking about setting one up, please email branch@hda.org.uk and we can support you in doing this.
Bristol branch
The Huntington's Disease Association Bristol branch is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area. We are a friendly social group who meet a few times during the year. We meet in different venues throughout Bristol, so please get in touch to find out when and where our next meeting is.
Up and coming events
Saturday 7 October 2023 - 12 Noon
The Fox Den Country Pub and Restaurant
New Road, Stoke Gifford, Bristol BS34 8TJ
Sunday 3 December, 2023 - 12 Noon
Bristol Branch Christmas Lunch
589 Southmead Road, Filton, Bristol BS34 7RG
Sunday 17 December 2023 - 3pm
Online Zoom
Please email or call for the meeting link
Saturday, 27 January 2024 - 12 Noon
The Fox Den Country Pub and Restaurant
New Road, Stoke Gifford, Bristol BS34 8TJ
Saturday 24 February 2024 - 2.30 pm
Coffee, cake and chat
The Lounge - Cabot Court
69 Bath Rd, Longwell Green, Bristol BS30 9BR
Dorset branch
The Huntington's Disease Association Dorset branch is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area for the past 20 years. We offer support and friendship via social events in Dorset to local families. We also fundraise to support local families.
Plymouth support group
The Huntington's Disease Association Plymouth support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.
The Plymouth support group meet under the umbrella of the Livewell Southwest health care service provider, providing for patients living within the Plymouth area, although we do have visitors from further afield looking for more general support in the Huntington's family, from time to time.
We also invite health and social care professionals to our meetings to give occasional talks about various topics around Huntington's disease and usually welcome our local Specialist Huntington's Disease Adviser.
South West branch - Devon and Cornwall
Welcome to the South West branch of the Huntington’s Disease Association. We have been supporting families affected by Huntington's disease across Devon and Cornwall for 19 years.
Branch highlights
This year we have attended the Club Triumph Race Round Britain Rally. Our adviser for Devon and Cornwall met drivers and their support teams in Bude. The event itself raised over £70,000 for the Huntington's disease community.
Plym PieceMakers have nominated the Huntington's Disease Association as their chosen charity for the next two years. A member of the group is gene-positive and her husband helps run the South West branch. Plym PieceMakers are a group of quilters who meet once a month at Yealmpton Community Centre in Devon.
Our Adviser gave an informal information session to the group in June. We have also been actively supporting several small grants across the region and groups of volunteers have kindly forwarded donations to the branch.
The highlight of 2022 was attending the VW camper van rally near Crewkerne with our Specialist Huntington's Disease Adviser, Tiffany. Over £300 was raised in donations over the weekend and a considerable sum was kindly forwarded to the Association by the Club from the event proceeds.
We will update you two or three times a year with what's going on in the region and would love to hear from you about local events where possible. We are here to listen, help with problems and find the right people to give advice if needed.
Key contact
Secretary: John Crosswaite
07902 291 180
Treasurer: Gillian Lomas
hdaswbranch@gmail.com
Specialist Huntington's Disease Adviser
Justine Barkas
07749493566
Wiltshire branch
Welcome to the Wiltshire branch.
We have members from all of Wiltshire and Swindon join us for informal meetings. Our happy crowd have all sorts of connections with Huntington's disease. From pre-symptomatic, symptomatic and their families and their carers.
Bi-monthly we meet for tea and chat, these sessions are very helpful. Quite often it is a small comment of how someone else deals with something that can almost be a light bulb moment! On alternate months we will visit a local pub or cafe.
Over the years the branch has been able to offer some of our Huntington's disease family a small welfare grant to help them overcome some crisis in their family.
Where we meet
Yatesbury Village Hall
Yatesbury
Calne
Wiltshire, SN11 8Y
When we meet
We have bi-monthly meetings on the first Saturday of the month from 2.00pm.
On the alternate months we meet at a local pub in Swindon or a garden centre in Trowbridge over lunch.
For more information please contact tiffany.stevenson@hda.org.uk
Events
Key contact
Chair: Tiffany Stevenson
0117 2449483
Specialist Huntington's Disease Adviser
Tiffany Stevenson
0117 2449483
