Resources: Juvenile HD

General information / forums

Huntington’s Disease Society of America Guide to JHD
Web: www.hdsa.org/living-with-huntingtons/family-care/publications.html

Huntington’s Society of Canada Guide on JHD
Web: www.huntingtonsociety.ca/english/uploads/juvenilehd.pdf

Hopes pages from Stanford University on Juvenile HD
Web: www.stanford.edu/group/hopes/basics/juvenile/e0.html

Huntington’s Disease Advocacy Centre pages on Juvenile HD
Web: www.hdac.org/jhd

JHD Families (including forum)
www.jhdfamilies.co.uk

European Huntington’s Disease Network working group on Juvenile HD
Web: www.euro-hd.net/html/network/groups/jhd

Practical assistance

REACT – Rapid Effective Assistance for Children with potentially Terminal Illnesses
Web: www.reactcharity.org
React provide rapid assistance to families, for example by giving: help with travelling expenses, help with funeral expenses, a washing machine, clothing and bedding, a telephone, a special mattress, an electric wheelchair, holidays in one of it's four holiday homes.

Roald Dahl Foundation
Web: www.roalddahlfoundation.org
The Roald Dahl Foundation can provide small grants of up to £500 to provide financial assistance to help families cope with financial difficulties when faced with caring for a sick child (e.g., subsistence expenses, travel expenses to and from hospital, specialist equipment, appliances and payment of utility bills). The foundation assists families with a child/young adult (up to 25 years old) with a neurological or heamotological condition.

Contact a Family
Web: www.cafamily.org.uk
Contact a Family provide advice and support for parents caring for a disabled child or a child with a specific health condition e.g., working and caring for a child, benefits, school issues (special educational needs and the transition period). There is also information for siblings, fathers and grandparents. They have a useful newsletter with lots of helpful information.

Whizz-Kidz
Web: www.whizz-kidz.org.uk
Gives disabled children the chance to lead more independent lives.

Epilepsy

Epilepsy Action
Web: www.epilepsy.org.uk
They provide a number of services, including a freephone helpline (0808 800 5050) and information for children/teenagers. A useful contact if epilepsy-related issues are causing difficulties for you.

Children’s wish charities / special days

Willow Foundation
Web: www.willowfoundation.org.uk
The Willow Foundation will organise and fund special days within the UK for seriously ill young adults between the ages of 16 and 40.

Rays of Sunshine Children’s Charity
Web: www.raysofsunshine.org.uk

Promise Dreams
Web: www.promisedreams.co.uk

When You Wish Upon a Star
Web: www.whenyouwishuponastar.org.uk

The Starlight Children’s Foundation
Web: www.starlight.org.uk

Make-A-Wish
Web: www.make-a-wish.org.uk

Dreams Come True Charity
Web: www.dctc.org.uk

Children’s hospices

See our Juvenile HD: Children’s Hospices page

Challenging behaviour

The Challenging Behaviour Foundation
Web: www.thecbf.org.uk
The CBF provide information and support to parents and professionals caring for individuals with severe learning disabilities and challenging behaviour. They have a number of leaflets that may also be helpful to parents of children with JHD with challenging behaviour.

Brothers & sisters

Sibs
Web: www.sibs.org.uk
Sibs is for people who grow up with a brother or sister with special needs, a disability or chronic illness.

Young carers

Young carers groups can be very helpful. The following are two web sites that have information on young carers’ issues and local groups.
Web: www.youngcarers.net
Web: www.youngcarer.com

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