About our mission
The MYT1L Project is a parent-led, scientist-supported foundation established in 2025 to advance research into evidence-based interventions for MYT1L Neurodevelopmental Syndrome, a rare genetic condition marked by developmental disabilities, behavioral challenges, and obesity. Our mission is to foster collaboration between families, patients, and researchers to develop effective treatments that improve the quality of life for individuals and their families.
About this campaign
Your donation will help fund research toward the development of an ASO-based treatment for MYT1L Neurodevelopmental Syndrome - bringing much-needed hope to families around the world. Year-end donation dollars will also support other MYT1L Project initiatives, including the development of an international family registry and activities that unite and support families in need. Every dollar helps - and during this special period, THE FIRST $40,000 IN DONATIONS WILL BE MATCHED TOWARD OUR $80,000 GOAL!
Frequently asked questions
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It's the most impactful time of year
30% of annual giving happens in December. This means our year-end donations are always a huge factor in planning next year's efforts. With your generosity, we'll be able to plan bigger and better in 2026.
Source: Nonprofits Source, 2024
Families Served This Year
We provide immediate support to families facing the crisis of new diagnosis, ensuring they have access to accurate information and a community of fellow parents. Our monthly family support Zoom calls and annual in-person meeting help connect our community and promote ongoing research toward improved treatments. In 2026, we will be directly funding ASO research and the development of an international MYT1L family registry through grant and donor funds.
"I just wanted to send a heartfelt thank you for all of the effort you put into organizing such a meaningful and unforgettable weekend with the MYT1L project. My wife, son, and I left feeling deeply connected, inspired, and grateful! ... There was an unspoken understanding among everyone; no need to explain the repeated questions, the missed social cues, etc. Everyone just 'gets it'."
-Justin N.
"You made us feel so welcome and the whole experience was indescribable. I am so grateful to have been able to participate in this year’s meeting."
- Jill G.