Huntington's Disease Association

2009 heralded the 5th Juvenile Huntington’s Disease (JHD) weekend. JHD is a very rare form of a very rare illness affecting about 70 children in the UK. The weekend aims to offer three different things: firstly the opportunity for parents to meet with other parents who have children with the illness, to learn more about the illness, and to develop mechanisms to cope. Secondly for children affected by JHD to meet others in a similar situation, and to enable them to participate in activities that they would normally be excluded from, thereby providing them and their families with lasting memories. Also the siblings of these children often live in the shadow of their poorly brother/sister, with little attention paid to them despite being equally at risk of developing the illness. The JHD weekend provides them the opportunity to have fun, be a child, and ask any questions they may have.

Perhaps the best way to provide insight into the impact of the weekend is to view it from the perspective of two children who are affected by JHD. Tom (we’ll call him) is 16. His symptoms are predominantly behavioural; he was a challenge to the leaders for the weekend. He then talks about his life; he was, prior to diagnosis, deemed academically gifted and talented. Once he started failing at school, life at school became very unpleasant, and he was accused of throwing everything away – something he couldn’t understand as he knew he was trying very hard. This was coupled with the fact that he was athletically gifted, being county champion at several running events. Suddenly he could not achieve this any longer. Watching Tom attempting to have the coordination necessary to perform archery, and challenging his enthusiasm positively, serves as a reminder in a society quick to judge.

Tom's brother, Ben, had completely different problems. He lacked confidence to participate in anything and required constant encouragement and motivation being quiet and withdrawn... but once you could engage, if you could bottle up his giggle and laugh... you would make a fortune. Enabling him to succeed at abseiling, despite his extreme fear, and watching his delight, was an irreplaceable moment. Again, Ben was a county champion at swimming, something of which the illness had robbed him. Ben hugged me as he left the weekend, crying, and said it was the first time he had felt "normal" for two years.

Finally a comment from a parent as they left "...Thanks for another great weekend. I know that everyone benefits from going, I don’t know if you realise how much. It is not just the families that are special; it’s also people like yourself and all your team, amazing, dedicated people..."

A grant from BWCF provides the opportunity for the Huntington’s Disease Association to run the weekend for 3 years.

Click here to make a donation

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Sample collection of stories...
S.A.L.V.E.
Village Foundations
Kangaroos
The Ear Foundation
Aidis Trust
Cued Speech Association
SKIDZ
Disability Challengers
Asian Students Christian Trust
The Reedham Children's Trust
The Promise
The PACE Centre
Kenya Education Partnership
The Green Light Trust
National Blind Children's Society
Sunshine Early Stimulation Centre
New College Worcester
SELFA
Fun in Action For Children
Spina Bifida Hydrocephalus Scotland
Whoopsadaisy
Autism Bedfordshire
Daisy Garland
Sebastian's Action Trust
Let Us Play
FARA
Spinal Muscular Atrophy Support UK
Kidscape
The Rainbow Trust
Hope House
AT Society
Ambitious About Autism
Deafway
Dogs For The Disabled
The Spring Centre
SupportLine
Huntington's Disease Association
React - Rapid Effective Assistance for Children with Potentially Terminal illness
CHICKS
Honeypot
Hopscotch
Over The Wall
The Wingate Centre
The Bubble Foundation
Project Harar
MERU
DEBRA
Starlight
SASBAH
WellChild
Hop, Skip & Jump
The Children's Adventure Farm Trust
Rochdale Special Needs Cycling Club
Panathlon Challenge
The Youth Adventure Trust
Adventure Unlimited
How to apply for a grant
Complete List of Grants

A selection of grant recipients is listed below. Click on the logo for a link to their website.


Rainbow Trust

DebRA

MERU

Reedham Children's Trust


Ambitious About Autism

PACE Centre

Rainbow Centre

Richard House


bibic

WellChild

Dame Vera Lynn Trust

Bobath Centre


Elizabeth Foundation

Shooting Star

Disability Challengers

Hope House


Every Child

SMA Support UK

Starlight

Honeypot

The Barbara Ward Children’s Foundation

85 Fleet Street, London, EC4Y 1AE

Tel: 020 7222 7040 | Fax: 020 7222 6208

Email: [email protected]

Registered Charity No: 1089783 Registered in England No: 4213963