The Huntington's Disease Association exists to support people affected by Huntington's disease. The HDA also provides information and advice to professionals whose task it is to support Huntington's disease families.
Management Structure - The governing body of the Association is its Executive Council. This is made up of family members and professional people from England and Wales. There are separate organisations for Scotland, Northern Ireland and Eire. In addition, there are two external advisory committees: the Medical Advisory Panel which advises on projects submitted by researchers for funds and the 'Friends' of the HDA who are influential people working in medical, political and other such professions.
The HDA is financed through the generosity of Trusts, Foundations, the statutory and corporate sectors, Branches of the HDA, members and friends.
The Association has:
A Central Information, Advice and Support Service - which operates from its registered office in London. The Administration Team consists of paid staff and volunteers. The office is open on weekdays from 9.00am to 4.30pm. Head Office number - 0171 223 7000.
A Regional Care Advisory Service - which consists of a team of Regional Care Advisers who provide information and advice to families; answer crisis calls,. advise and liaise with other professional service givers; promote and develop a full range of local services; identify suitable respite and residential care facilities; liaise with local branches and self-help groups, give talks and organise seminars and training days in various parts of the country; provide speakers for training sessions and workshops for service providers and users such as health, social services, nursing homes and residential care staff teams.
Local Branches and Groups throughout the country - which provide a local, informal setting for families and individuals to mix socially; offer support and advice; share experiences and ideas; form local links with professionals and other groups in their community; fundraise', organise speakers etc., and, above all, provide a forum to share a common purpose and reduce the feeling of isolation
Together with the help of our local Branches and contacts we constantly strive to raise awareness of Huntington's disease and the Association so that families and professionals will know where to get help, support and advice. And - in order to eradicate ignorance - to promote a better understanding of the disease among the general public.
A Research Programme - which promotes and funds both medical and social research. New applications from researchers are encouraged.
The Association offers:
A Heipline Service - to provide help and support. A Regional Care Adviser is available from Monday to Friday
A twice-yearly Newsletter.
Publications and information - we publish a range of booklets, leaflets, fact sheets, information packs for professionals etc., on various aspects of Huntington's disease.
A Welfare Grant Fund - for providing small grants to families and individuals in particular need.
A Respite and Residential Care Fund.
Membership
If you join the Association you will receive the twice-yearly national newsletter and, if your local Branch produces its own newsletter, you will also receive a copy of that too. Membership is free but, as a charity, we do rely heavily on donations. Once you have been on the mailing list for 6 months you can also apply for voting membership. Voting members receive a copy of the HDA Annual Report and are eligible to vote at the Annual General Meeting. The AGM is usually held in the autumn.
Fundraising
We have a range of fundraising, publicity and promotional items from collecting boxes to publicity posters, sponsorship forms etc., (which can be personalised to your specific needs for activities and events).
Our publication order form lists what is currently available.
Fact sheets available from the HDA:
1. All about the Huntington's Disease Association
2. General Information about Huntington's Disease
3. Predictive Testing for Huntington's Disease
4. Talking to Children about Huntington's Disease
5. Information for Teenagers
6. Eating and Swallowing Difficulties
7. Huntington's Disease and Diet
8. The Importance of Dental Care
9. Communication Skills
10. Behavioural Problems
11. Sexual Problems '
12 Huntington's Disease and the Law
13. Huntington's Disease and Driving
14. Advice on Life Assurance, Pensions, Mortgages etc.
15. Seating, Equipment and Adaptations
16. Checklist for Choosing a Care Home
Booklets
Huntington's Disease in the Family (1997)
A booklet produced for young children
Facing Huntington's Disease
A handbook for families and friends
For a publication order form, membership form, details of our Regional Care Advisers and local Branches and Groups, please telephone or write to:
Huntington's Disease Association
108 Battersea High Street London SW11 3HP
Tel: 0171 223 7000 - Fax: 0171 223 9489
Registered charity no. 296453