Officially Launching in October 2025!
Welcome to The Voices of MED13L
The Voices of MED13L Podcast is brought to you by The MED13L Foundation and co-hosted by Katie Boychuck, Chair, and Vanessa Dias, Vice Chair. Both are parents of children with MED13L, and their personal journeys have set them on a path to push for research, create change for a better future, foster connection within the community, and continue the search for treatments and ultimately a cure.
In this podcast, you’ll hear:
- Updates on the latest research and therapeutic discovery
- Stories from families living with MED13L around the world
- Insights from clinicians and researchers working to unlock new possibilities
Together, Katie and Vanessa bring the voices of science, family, and community into one space — helping fuel hope for tomorrow while strengthening the bonds of today.
✨ Subscribe today and join us for The Voices of MED13L — where connection, discovery, and hope meet.
This trailer episode is hosted by Rowan Dias, a student at Deerfield Academy in the Class of 2027 and sibling of a child with MED13L Syndrome, who, with the help of a generous grant from Deerfield Academy's Center for Service and Global Citizenship, helped set up the podcast during a summer internship to expand the Foundation’s reach to families, researchers, and supporters.
Visit our website at www.med13l.org & follow us on social media @med13lfoundation
Resources
Be Counted in the 2025 Census: med13l.org/research-hub/join-med13l-research-opportunities/med13l-registry-enrollment
Community Checklist: Google Drive Link
CRID: thecrid.org
Citizen Health: citizen.health/partners/med13l-foundation
Rare-X: rare-x.org/med13l
Website: med13l.org
Facebook: facebook.com/med13lfoundation
Instagram: instagram.com/med13lfoundation
YouTube: youtube.com/@med13lfoundation/videos
Glossary: med13l.org/knowledge-base/glossary
Music Credit:
Intro and outro music for the Voices of MED13L Foundation podcast was composed and performed by Sophie Seaver, sibling of an individual with MED13L syndrome. We thank Sophie for sharing her talent with our community.
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