May is
MED13L Awareness Month
May is MED13L Awareness Month — a time to raise awareness, share stories, and fundraise for critical research all month long. At the heart of it is World MED13L Day, celebrated each year on May 13th — a powerful global moment of unity, action, and hope for the MED13L Syndrome community.
This year marks our most important World MED13L Day yet. The MED13L Foundation is in the process of issuing two research grants totaling over $300,000 to help answer parents’ questions about MED13L and better support our children and their futures. We can’t wait to share more details about these two grants this May.
We chose May 13th not just because it reflects the gene’s name (MED13L), but also because May is Apraxia Awareness Month. Apraxia of speech, delayed speech, or absent speech are among the most common challenges our children face. The 13th gives us the perfect date to spotlight our MED13L zebras — and May gives us the perfect month to raise our voices for kids who are still learning to use theirs.
Together, we are telling their stories, advancing science, and building the future they deserve.
This is what you are supporting.
Donate Today.
Why Your Donation Matters.
As parents, we share the same hopes—for answers, for progress, for brighter days ahead.
We’re raising over $300,000 to fund two vital initiatives that could bring meaningful change for children with MED13L syndrome.
With your support, we move closer to the treatments our kids deserve—and the future they deserve, too.
Keep an eye on this page—updates are coming soon about these amazing new initiatives! In the meantime, dive into the research we’re already doing and see the progress we’re making together here.
Help Spread the Word!
Proud to support the cause? Let the world know! We’ve created a set of shareable images you can post on social media to celebrate your donation and encourage others to get involved. Click below to access the graphics on Google Drive.
The MIND Study: An Innovative Step for MED13L Syndrome
This MED13L Awareness month, we are proud to announce the launch of the MIND Study (MED13L Syndrome Investigation of Natural History and Development)—a major milestone in our journey to understand and treat MED13L Syndrome. In partnership with Boston Children’s Hospital, the MED13L Foundation has committed $250,000 to fund this three-year longitudinal natural history study—an essential step toward improving clinical care and preparing for future clinical trials.
What is a natural history study (NHS)?
It’s a research study that collects long-term health data from individuals with a specific condition—in this case, MED13L Syndrome. This data helps researchers understand how the disorder progresses over time and identifies what changes matter most, so future treatments can be measured and approved.
Why It Matters:
- For Families: This is your chance to be part of the science shaping your child’s future. Your child’s participation helps unlock critical knowledge about symptoms, progression, and unmet needs.
- For Industry & Researchers: High-quality data from the MIND Study will help define meaningful clinical endpoints and support the design of future trials. This is a signal: the MED13L community is ready.
How You Can Help:
We need your support to raise the remaining funds and recruit 30 children to participate—starting with 20 in-person at our July 2025 Research & Family Conference. This is our moment to come together and drive change.
Keep an eye out for emails with enrollment details coming soon!
