Our team of trustees, volunteers, and staff are represented by 16 parents of children and adults with SMS and bring a wealth of lived experience of the syndrome.
We also have a strong team of dedicated volunteers who contribute their valuable time to support our cause with their professional experience and expertise.
The SMS Foundation UK was started over 30 years ago by a group of parents, eventually becoming a small registered charity run by trustees. In 2020 we employed a part-time staff team in line with the increasing size of our SMS community and our workload. Since then, we’ve seen the number of patients and families involved with the charity grow 43% and the known community has nearly doubled.
We continue to secure funding and we are supported by the incredible efforts of many supporters, making it possible to deliver important support to families and patients.
Despite the turbulence of the pandemic we continue to operate as a staffed charity with CIO status. In the past three years, we have recruited three members of staff, expanded our board members, delivered a conference, increased our family membership, supported a rise in enquiries, provided 12 individual grants, introduced a regular giving scheme, delivered training into two schools, and supported 12 research projects.
History of the SMS Foundation UK
The Foundation was first started as a support group in 1992 by Julie Jowitt, known then as the SMS Contact Group. With the help of Contact-A-Family the group developed from an initial set of 6 families by writing to doctors all over the world who then sent information and referred families on to Julie.
Julie asked her son’s geneticist to write the original information leaflet which was printed and sent to every genetics department in the country. She wrote regular newsletters and even organised a Chritsmas card competition financing much of the work herself. By 1998 the group of families numbered 200, and they were obliged by law to form a charity. After running the group for 6 years Julie handed over to Olga de Chassey to become the first Chairperson of the charity, and it was her suggestion that the name should be changed to the Smith-Magenis Foundation.
Since the foundation began families have been put in touch with each other, professionals have been brought together and a common focus has developed. There have been a number of very successful conferences involving families and professionals and an increase research focusing on many of the key aspects of Smith-Magenis syndrome – particularly genetics, sleep and behaviour.
The initial foundation set up the constitution with the following objectives;
- To preserve and protect the health and promote the relief of individuals affected by SMS and their families.
- To advance the education and knowledge of both medical professionals the general public about SMS and its implications for the family.
- To promote and support research into the management and affect of SMS.
Whilst over the years the board of trustees has evolved and altered, the focus of the foundation has not. The primary focus continues to be:
- To support families and individuals with SMS.
- To educate and increase the knowledge and understanding of SMS.
- To support and promote research