Working together toward a cure
Family Community Facebook Group
The Original 2p25 / MYT1L Family Community (a private families only Facebook page) is an international community of families impacted by chromosome 2p25 differences of all kinds, usually including the MYT1L gene. Members come to share both challenges and triumphs, learn from other families, and find support from those who have travelled the same rare journey. In this group, you will find people of all ages and from all corners of the world impacted by MYT1L syndrome. The chart below shows the geographic distribution of Facebook family pages as of October 2025. Our group welcomes new families every week.
​
​
​​
Total: 391 families
Graphic is based on information from our private Facebook group together with other families known to our Foundation.
How our Facebook community became The MYT1L Project
The parents who created our foundation originally met on Facebook in the Original 2p25 / MYT1L Family Community - and that connection became The MYT1L Project Foundation. Our first U.S. meet-up in St. Louis brought those online friendships into the same room in October 2024 when we met with researchers at WashU to learn about advances in MYT1L research. The parents in those meetings came together to create our U.S. foundation, and we began the hard work to make it official. We've made significant progress since!
A year later in October 2025, our foundation hosted the MYT1L Family & Researcher Meeting. Below is a photo from our most recent gathering of families in St. Louis.
​
We've also included a couple pics of other gatherings with our friends in France, who we also met through the Facebook family group and who helped spark this global community.
Our MYT1L Facebook family community brought U.S. families and researchers together in St. Louis. Pictured here are MYT1L families and clinicians at Washington University in St. Louis for The MYT1L Project Foundation’s Family & Researcher Meeting in October 2025.
The MYT1L Facebook family group has helped connect families worldwide. Pictured here are families from France, England, and the U.S., gathering after meeting at the first-ever MYT1L Day for families, physicians and researchers in Rouen, France, in November 2022.
Families from around the world walked together through Rouen, France, on their way to the second MYT1L Day in June 2025 — a beautiful reminder of the community and friendships that continue to grow through our MYT1L network and the Facebook family community group.