Our Team Fundraising Page
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.
Our Team
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Ellie Burnett Team Captain $28.68
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Ian Sansom $25.00
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Addie Burnett $17.00
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Sylvie Burnett
Recent Activity
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Margaret Reynolds made a donation to Sylvie’s Midnight Special
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Mary Claire McGlynn made a donation to Sylvie’s Midnight Special
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Claire Burnett made a donation to Sylvie’s Midnight Special
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Ralph Burnett donated $500.00 to Sylvie’s Midnight Special
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A donation was made to Sylvie’s Midnight Special
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Our Supporters
- Margaret Reynolds 9 hours ago
- Mary Claire McGlynn A day ago
- Claire Burnett A day ago
- Ralph Burnett 4 days ago $500.00
- Dorothy Sansom 5 days ago
- Ralph Burnett 4 days ago $500.00
- Sean Tracey 6 days ago $105.50
- Eleanor Burnett 6 days ago $105.50
- Beth Mccoy 2 weeks ago $105.50