Episode 1: Welcome & Where We’re Headed
Hosted by Vanessa Dias & Katie Boychuck
In this trailer episode, we introduce the hosts and The MED13L Foundation—how it started, what drives us, and why this podcast exists.
Whether you're navigating a new diagnosis, supporting a loved one, or working in research or medicine, this episode offers a personal and accessible introduction to MED13L Syndrome and the global community coming together around it.
We share the story of how the Foundation began, our mission and values, and what success looks like as we push toward earlier diagnoses, stronger family support, and meaningful progress in research.
What you’ll hear in this episode:
– Meet your hosts
– How the MED13L Foundation came to be
– Our mission, values, and goals
– How we’re building connection, support, and hope
– What to expect from future episodes
Resources
Register with the Foundation’s Census: HERE
Access the Community Checklist: HERE
Citizen Health: https://www.citizen.health/partners/med13l-foundation
Rare-X: https://rare-x.org/med13l/
Website: www.med13l.org
Facebook: https://www.facebook.com/med13lfoundation/
Instagram: https://www.instagram.com/med13lfoundation/#
Next up:
Updates and the Foundation’s most pressing needs.
Submit topics you'd like to hear covered HERE
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.
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 ...
