Over 40 years of the Williams Syndrome Foundation
In 1976 Lady Cynthia Cooper began to research Infantile Hypercalcaemia (IHC) after her daughter Clare (then aged 14) had been diagnosed with the condition at eight weeks old and had since developed learning difficulties.
Recognising that there was very little information or support available, Lady Cooper and her husband, General Sir George Cooper, decided to set up a charity to help other families in the same situation.
In 1980 the Williams Syndrome Foundation was created, bringing families and healthcare professionals together.
Forty years on, we have evolved to deliver an extensive range of information outlets supporting more than 900 families across the country. We are almost entirely funded by public generosity.
In those 40 years, our name and our mission has never changed. We believe that every family coping with the care of a child or adult with Williams Syndrome should have the support and information they need.
We do this by providing a wide range of services including;
- An excellent team of Regional Contacts – all family members of WS children – who offer support to our members and organise local family gatherings.
- Our very own Professional Advisory Panel (PAP), made up of doctors, psychologists, scientists and a dedicated nurse.
- A website that provides fast access to information, research articles, news and fundraising, with a private members area.
- Numerous guidelines and information leaflets to help WS families with issues ranging from medical support to advice on benefits and education.
- A biannual members magazine, ‘Talk to Me,’ with the latest news, achievements, personal experiences, research and details of events.
- A national convention every two to three years for families to get together and learn more about WS and the WSF through seminars from health professionals.
- Running an annual nationwide Awareness Campaign, helping to educate more people about Williams Syndrome.
This year, the charity is celebrating all that has been achieved with the support of its members, volunteers, fundraisers and healthcare professionals and thanking everyone for their contributions towards the WSF.