Support points
Association/Foundation collaborators
&
Exchange groups reserved for families

International Family Exchange Group
International family-run Facebook group, accessible only to families with a member affected by the syndrome: The Original 2P25/ MYT1L Family Community
There is a DEEPL translation tool that can help you with your exchanges.
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Groupe Francophone d'échanges entre familles
Groupe Facebook principalement Français (continent, DROM/COM) et pays francophones géré par les familles, accessible uniquement aux familles ayant un membre touché par le syndrome : La Bulle des Extra-Vaillants MYT1L



The words of Elizabeth WOOD, President of the American foundation The MYT1L Project.
Liz explains the contents of the website, where you'll find everything you need to know about their history and creation:
"At the MYT1L PROJECT website, you will find:
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Information about MYT1L Syndrome, including symptoms, treatments, and the different genetic differences that cause it
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Photos, videos and parent testimonials
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A tribute to our beloved MYT1L elephant logo (kindly shared by Valérie Salomone, its creator)
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Information about ongoing ASO research at Washington University to identify a gene-based treatment for MYT1L (and a Donate button to help support it)
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A comprehensive list of scientific publications about MYT1L
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A summary and layperson’s description of areas of current research
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A pie chart showing the geographic distribution of our Facebook community
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A Donate button for U.S. tax-deductible contributions supporting capacity building and ASO research
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Our mission statement, history, board of directors, and scientific advisory group
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Listings of upcoming virtual and in-person gatherings
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And more!
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Our foundation will work in close collaboration with our partner in France, Les Extra-Vaillants MYT1L, to unite families and researchers around the world toward a brighter future for children and families impacted by MYT1L differences."
THE MYT1L PROJECT
THE AMERICAN TEAM
The MYT1L Project Website Team
Matt Batcheldor, parent of Natalie
Katie Clawson, parent of Presley
Liz Wood, parent of Kayla
Cc: The MYT1L Project Leadership Team
Board of Directors
Elizabeth Wood, President
Kate Kratofil, Vice President
Matt Batcheldor, Secretary
Brittany Gary, Treasurer
Katie Clawson, Marketing Lead
Allison Coshenet, Regulatory Lead
Farah Fehring, Fund-Raising Lead
Amanda Eley, Director At-Large
Scientific Advisory Group
Joseph Dougherty, PhD, Washington University
Joseph Katakowski, PhD, RTW Foundation