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| Danny (centre) with his cousins on holiday |
The Sturge-Weber Foundation UK is a voluntary support group for families and adult sufferers affected by Sturge-Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990 as a independent group by the disability support organisation Contact a Family.
Sturge-Weber syndrome
This is a rare disorder of unknown incidence and origin; although present at birth, it is NOT thought to be hereditary. Sturge Weber is usually indicated by a birthmark (port wine stain) somewhere on the face, usually involving the eye and forehead, also similar blood vessels on the brain, called an angioma. Those who suffer from SW often suffer from epilepsy, hemiplegia (a weakness or stiffness affecting one side of the body, similar in appearance to that of a stroke), glaucoma and learning difficulties. Symptoms usually occur in the child`s first year of life.
Membership
Membership is entirely free to professionals, sufferers and their families.
Aims
- To provide support and information on differents aspects of the syndrome and to raise both public and professional awareness of the condition.
- To promote medical research into the causes and treatment of this syndrome.
- A Family Weekend is organised every year, usually in October, when doctors and other professionals talk about relevant topics.
- A Newsletter is produced and information leaflets are available.
