Intro to Growing Up With MED13L

Welcome to The Voices of MED13L, the official podcast of the MED13L Foundation.

In this special trailer, host Vanessa Dias introduces Growing Up with MED13L — a new ongoing series that explores what life looks like for individuals with MED13L at every age and stage.

Each episode features a family from our global community, sharing their lived experiences — from early diagnosis to daily routines, school transitions, therapy progress, and life as a teen or young adult.

The series isn’t chronological, because our journeys are not the same. Whether you’re hearing from a family whose child is close in age to yours or several years ahead, these conversations offer connection, perspective, and hope.

Together, we’ll highlight the incredible resilience, progress, and love that define growing up with MED13L — and remind every listener that they are not alone.

🎧 This is Growing Up with MED13L: Life at Every Age.

Support the show

Resources

MED13L Awareness Campaign: https://secure.qgiv.com/event/med13lfoundationp2p/

Profile Frame for Socials: https://twb.nz/med13lfoundation

Be Counted in the 2025 Census: https://med13l.org/patient-registry-genetic-report-stubmission/

Million Dollar Bike Ride: https://charity.pledgeit.org/MillionDollarBikeRide/teams/@med13l

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/med...