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Support points 

Association/ Foundation collaborators
&
Exchange groups reserved for families
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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

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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:

  • Information about MYT1L Syndrome, including symptoms, treatments, and the different genetic differences that cause it

  • Photos, videos and parent testimonials

  • A tribute to our beloved MYT1L elephant logo (kindly shared by Valérie Salomone, its creator)

  • Information about ongoing ASO research at Washington University to identify a gene-based treatment for MYT1L (and a Donate button to help support it)

  • A comprehensive list of scientific publications about MYT1L

  • A summary and layperson’s description of areas of current research

  • A pie chart showing the geographic distribution of our Facebook community

  • A Donate button for U.S. tax-deductible contributions supporting capacity building and ASO research

  • Our mission statement, history, board of directors, and scientific advisory group

  • Listings of upcoming virtual and in-person gatherings

  • 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

© 2021 by Les Extra-Vaillants - MyT1L. Created with Wix.com

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