STURGE WEBER UK

STURGE WEBER Foundation UK
Registered Charity Number 1016688

The Syndrome

Sturge Weber syndrome is a rare neurological disorder of unknown incidence and origin. 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.

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HOME----About Us----Glaucoma----Epilepsy----Ketogenic Diet----Port Wine Stains

Join----Donate----Useful Addresses----Achievemnets to Date---- Benefits---- Tribute to Jill

Council Tax Discount ----Alice - A Special Little Girl----Independent Living Fund

Family Weekend 2000----Family Weekend 2001----Family Weekend 2002

Family Weekend 2003----Family Weekend 2005----Christmas Cards

The Charity

The Sturge Weber Foundation (UK) was launched in 1990 by Contact a Family and is an independent voluntary support group for families and adults who suffer from this syndrome.

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.

CONTACT US AT:-

Burleigh, 348 Pinhoe Road, Exeter, Devon, EX4 8AF

Telephone :- 01392 464675

Fax :- 01392 464675

E mail :-support@sturgeweber.org.uk