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 in 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