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.

Support the show

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

Support the show