Resources

Juvenile HD

General information / forums

Practical assistance

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.

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.

Whizz-Kidz

Web: www.whizz-kidz.org.uk

Gives disabled children the chance to lead more independent lives.

Special Effect

Web: www.specialeffect.org.uk

Helps young people with disabilities to use leisure technology.

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

Dreams Come True Charity

Web: www.dctc.org.uk

Happy Days Charity

Web: http://www.happydayscharity.org

Make-A-Wish

Web: www.make-a-wish.org.uk

Promise Dreams

Web: www.promisedreams.co.uk

Rays of Sunshine Children's Charity

Web: www.raysofsunshine.org.uk

The Starlight Children's Foundation

Web: www.starlight.org.uk

When You Wish Upon a Star

Web: www.whenyouwishuponastar.org.uk

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.

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.