At the foundation our primary focus is to support families – we do this in a variety of different ways:
- Provide information – we have a variety of literature available on the website or in booklet form
- Direct any questions you have to relevant professionals. We are not medical professionals, so any questions related to sleep, medication, behaviour, etc we will forward on to our board of professionals who do know
- Provide emotional support on the phone or in-person
- Provide information for interested parties ( e.g housing/education etc) about Smith-Magenis Syndrome
- Organise biennial conferences which allow our Smith-Magenis syndrome community to share information, experiences, ideas, and knowledge
- We promote awareness of SMS through our partnerships with other charities and organisations including Cerebra, Genetic Disorders, and Jeans for Genes
- Fundraising events – As this not only raises much-needed funds for the foundation it also creates an awareness of Smith-Magenis Syndrome
- Media campaigns – We have been involved in organising or directly taking part in TV interviews, radio interviews, as well as newspaper and magazine articles to discuss Smith-Magenis Syndrome
- Developing merchandise – including key rings, wristbands, t-shirts, bags, baseball caps coasters, and car stickers
- Sponsorship of research into the key symptoms of Smith-Magenis syndrome
- We provide small grants (up to £500) to improve the quality of life of the person with SMS, and financial support (up to £200) for social events (get-togethers) for members to connect with other SMS families and share experiences.
Please do not hesitate to get in touch with us if you have any questions or suggestions.
