Virtual Walk 2026

Sylvie’s Midnight Special

August 4, 2026 11:00am - November 15, 2026 11:59pm

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Smith Magenis Syndrome has major impacts on Sylvie's quality of life. Next year, she'll be embarking on kindergarten and we have already been in discussions with our local schools about accommodating her nap and mitigating self-injury and other harmful behavior during the school day. With no treatment that addresses the underlying causes of SMS, we will be having some version of this conversation continuously, throughout Sylvie’s entire life. Other genetic syndromes are starting to have effective gene therapy treatments that address underlying causes and improve quality of life beyond existing options. We hope SMS will have treatment options on the 5 year time frame proposed by the SMS Research Foundation. Sylvie is going to rock elementary school, but we’d like her to do it with high quality, reliable sleep and without navigating extreme behavior and its fallout.

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