Our history.

The charity was founded in June 2000, by a parent of an sds child. This ladies name was Kim Wright.The support group is a non-profit patient advocacy organization.

SDS UK. Our income is mostly donations from families and bigger voluntary organizations. funds are often distributed in the following way:

• Research projects- more than often submitted to us as a request for funding from our medical advisory board members or other agencies.
• If a sum of  money is donated to the charity for a specific purpose, we have to Restrict that donation for research purposes only.
• your donations are also used for family support, family weekends and days out(scientific and family).
• Administration and conference's.
• Public liability insurance and fund raising.

Our staff.

Sharon Clusker Chairperson

Tracy Horsfield secretary and Family Spport Officer

Maureen Quinn Family support worker and NHS Social Worker

Professor John Dodge Chairman of sds UK Medical Advisory Board

Volunteers and Family Volunteers Names and Addresses can be requested.

The charity consists of  trustees and volunteers, and family members who act as a link to newly diagnosed families, who offer support at the early stage of Diagnosis.

The aim of the trustees is to ensure there is not only support on a medical level and emotional level, but to offer a link to other support groups worldwide and share support and information.

We have our own professional medical advisory board  and we have regular meetings to keep updated on the medical information needed to give families,  correct and accurate advise.