What We Do

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 the professionals – we are not medical professionals and so any questions related to sleep, medication, behaviour etc we will forward on to our board of professionals who do know – or put you in touch with them directly.
  • Provide emotional support - on the phone or in person support maybe answer questions, be an ear to listen or a shoulder to cry on.
  • Provide information for professionals or bodies ( e.g housing/education etc) about Smith-Magenis Syndrome.
  • Organise and promote social get-togethers. We encourage local area meets and will help to promote if requested.
  • Send out quarterly newsletters – These will keep you up to date about anything that is going on in the Smith-Magenis Syndrome world!
  • Sponsor and organise bi–annual conferences – These conference allow parents to hear up to date information from key professionals and allow parents to share ideas & experiences, share successes and seek advice from other parents.
  • In addition to the family support we are also do our best to promote awareness of SMS – this has been done through.
  • 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 cups, key rings, wristbands, t-shirts, bags, Christmas cards, and awareness car stickers.
  • Reprinting of booklets and leaflets and making them more freely available.

Research is also very important and at the foundation we work closely with the board of professionals to discuss potential research projects and the benefit of research proposed to the families and individuals with SMS.
 
We are always here to help, so good days or bad please contact us and we will do our best to help you.

Additional information