The Voices of MED13L
"The Voices of MED13L" is a podcast dedicated to raising awareness, sharing stories, and building community around MED13L syndrome—a rare genetic disorder that affects development and communication. Each episode highlights the voices of families, experts, and advocates working to understand and navigate life with MED13L. From personal journeys and medical insights to educational tools and research updates, the podcast offers hope, support, and connection for anyone impacted by this rare condition. Whether you're a parent, professional, or simply curious, "The Voices of MED13L" is a space to listen, learn, and stand together in the face of the unknown.
Visit us at www.med13l.org
Follow us on Instagram & Facebook: @med13lfoundation
X: @med13l_fdn
The Voices of MED13L
Growing Up With MED13L: Life at 16
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In this episode of Voices of MED13L, we begin our series Growing Up with MED13L with a powerful, in-depth look at the teenage years. Host Vanessa Dias is joined by fellow MED13L parent Michelle Seaver, who shares what life looks like for her 16-year-old daughter today — from communication and learning to socialization, independence, and daily routines.
Many families wonder what adolescence might hold for their child with MED13L. Michelle offers an honest and hopeful look at the realities of life at 16:
- How her daughter communicates and advocates for herself
- What school, friendships, and confidence look like
- Where she needs support — and where she shines
- How boarding school has helped her grow socially and academically
- What independence can look like for teens with MED13L
- Why progress is real, just on a different timeline
This conversation is grounded, encouraging, and deeply relatable for any family thinking about the road ahead. Michelle also shares insights on therapies, life skills, reading development, and the importance of community — along with a glimpse into future possibilities through programs like Riverview and beyond.
Growing Up with MED13L: Life at 16 is part of our ongoing series highlighting lived experiences across childhood and adolescence. For newly diagnosed families or anyone wondering what the future may look like, this episode offers reassurance, perspective, and real stories of growth.
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 of...
Kathleen Boychuck, Chair of The MED13L Foundation
Co-host
Vanessa Dias, Vice Chair of The MED13L Foundation
Co-host
Michelle Seaver
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