Information and Advice for Caregivers & Professionals
The Smith-Magenis Syndrome Foundation are very pleased to mark our SMS global awareness day by the release of our newly updated and formatted booklet ‘Information and Advice for Caregivers and Parents’. This can now be downloaded from our website by clicking here. We would like to thank Dr Lucy Wilde for all her dedicated hard work in researching, writing and creating this revised edition as well as all the members of the SMS professional board who provided input into the booklet. We hope you’ll agree that it is packed with useful information and has lots of practical advice for carers and parents raising a baby, child or adult with Smith-Magenis syndrome.
Johnny Davies to complete the 350 mile Arctic Ultra Marathon
On the 20th of March 2015 Jonny Davies will be competing in the 6633 350 mile arctic ultra marathon in Northern Canada in aid of three separate charities. One of those charities is the Smith-Magenis Syndrome Foundation.
Jonny has a younger sister Clare who has SMS and wants to raise awareness and funds to support the work we do.
To follow Jonny's journey please like his page by following this link https://www.facebook.com/JD6633?fref=ts
direct link to his fundraising page :
https://mydonate.bt.com/fundraisers/jonnydavies6633— with Smith Magenis.
Ruabon boy finds words to tell mum: 'I love you'
Clare Barker, 44, who lives near Ruabon, have spoken to their local paper The Leader about her young son Toby’s tear-jerking breakthrough. Clare and her family have been raising awareness for Smith-Magenis syndrome ahead of the Chester Half Marathon on May 18 which Clare will be running to raise money for the Smith-Magenis Syndrome Foundation.
To read the full article, please click here.