Before 1990 the only form of support for Sturge Weber sufferers was by contacting a lady who has a daughter with the syndrome. She would send out what information was available ( which was very little ) and would answer any questions if she could. That came to an end when her daughter's health became worse and she could no longer cope with all of the mail. She handed all the addresses to Contact a Family (CaF) in London.
CaF is a large umbrella charity which holds details of all groups for rare syndromes and they help support these groups in their work. CaF wrote to everybody on the list to ask if they would like to come to a National Family day. The response was good and the day went ahead. At the Family Day there was a speaker on SWS who answered our questions and later volunteers were asked for to form a steering committee. A number of parents came forward and agreed to take on the task.
None of them had ever done anything like that before and they were quite apprehensive but, with the guidance of CaF, The Sturge Weber Foundation (UK) finally became a registered charity in January 1993. We now have our own medical leaflet, poster and a newsletter. The committee, who are all unpaid volunteers, consist of parents of Sturge Weber children and adults.
Our main and most important role is to provide support and information for SW sufferers and their families.
In May 1990 we held our first National Family Day.
Our next goals are to produce leaflets on all aspects of the syndrome and raise the profile of SWS amongst the medical profession and the non medical, this will help to ensure that children are given the appropriate treatment as early as possible.
This all costs money and we are constantly trying to raise money to further our aims, although this is on a purely voluntary basis.
Trying to fund research into the cause, effect and treatment of Sturge Weber Syndrome will never interfere with our primary role of supporting families and bringing them together for mutual support.