The Smith-Magenis Syndrome Foundation UK is lead by a Board of Trustees, all of whom have a child born with SMS. The trustees provide advice and support to families of people with SMS as well as arranging local meet ups and providing small grants to members. Hazel Wotherspoon, of Falkirk, is the chairperson of the foundation.
“The SMS conference is the largest undertaking of the board,” Hazel explains. “It is held every two years. The most important part for me is meeting with other families who are walking a very similar road and who have the greatest understanding of my life. I say ‘similar’ because all our children are different…yet the same. I love meeting new families and expanding my SMS family.”
At the conference, families will also hear presentations from different professionals about recent research and therapy opportunities. Because Smith-Magenis syndrome is so rare, information can be difficult to come by. In fact, most medical professionals have never even heard of SMS.
Because of this, the trustees offer literature and up to date research information for their members. The foundation also engages with a professional board where they can direct members to professionals experienced with Smith-Magenis syndrome. For the first time, the conference will run a third day to give the attendees a chance to recover from the hectic schedule of meetings and visit in a relaxed atmosphere. A crèche service will be available and plans are being made to provide siblings with day trips during the long weekend.
For those staying at the venue, evening meals and entertainment will also be included. “We usually have a Saturday night social,” Hazel describes. “It’s a time when we can really enjoy ourselves and watch our children enjoying themselves. We know that any meltdown or SMS related problems will not be looked on askance.” Hazel does point out a downside to the conference, though. “I usually feel a bit deflated and sad the day after conference finishes.”
For more information about the conference, visit the Smith-Magenis Foundation UK’s website: www.smith-magenis.co.uk
Companies or individuals interested in helping to fund the conference through one of the foundation’s sponsorship packages are asked to contact the trustees through [email protected]