The foundation initially set up in 1998 by a set of parents who realised that due to the rarity of the syndrome, there was very little knowledge or support out there for parents or professionals.
They realised that many families were being left alone and isolated due to the limited knowledge about SMS from both professionals and the general public. Through the development of the foundation, families were put in touch with each other, professionals were brought together and a common focus starteds to develop. From this educational conferences for parent and professional involvement and increased 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