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:
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
Simons Searchlight: https://research.simonssearchlight.org/account/create
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 ...
