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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
Episodes
12 episodes
May is MED13L Awareness Month
An Honest Look at MED13L, Our Community, and the Foundation Behind ItMED13L Awareness Month Special | May 2026This Awareness Month, host Vanessa Dias gets honest — about the spectrum of MED13L, the families the found...
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Growing Up With MED13L: Life at 14
Growing Up with MED13L: Life at 14In this episode of Voices of MED13L, we continue our Growing Up with MED13L series with an honest look at the teenage years. Host Vanessa Dias is joined by Chelsea and Vern Klass...
Growing Up With MED13L: Life at 16
In this episode of Voices of MED13L, we continue 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 ...
Why the MIND Study Matters: Building Clinical Trial Readiness for MED13L with Abigail Svedeen, MS, CGC
Why the MIND Study Matters: Building Clinical Trial Readiness for MED13LIn this powerful and informative episode of Voices of MED13L, Vanessa sits down with Abigail Sveden, MS, CGC, a genetic counselor at the Bosto...
Growing Up With MED13L: Life at 11
Growing Up with MED13L: Life at 11 (with Anna Fracalossi)Welcome back to The Voices of MED13L, the official podcast of the MED13L Foundation. I’m Inon Shampanier—dad to a child with MED13L and your host for today’s episod...
Growing Up With MED13L: Life at 12
Growing Up With MED13L: Life at Age 12In this episode of The Voices of MED13L, we launch our new Growing Up With MED13L series with a powerful and honest conversation titled “Life at 12.” Host Vanessa is joi...
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 lik...
Citizen Health: 13 Minutes With MED13L
Mini Episode: 13 Minutes with MED13LHost: Katie Boychuck, Chair of the MED13L FoundationIn this first-ever 13 Minutes with MED13L mini-episode, Foundation Chair Katie Boychuck walks families ...
Introducing Phil Buta & The Importance of Surveys
Episode 2: Introducing Phil Buta & Why Surveys MatterIn this episode, we welcome Phil Buta, the newest leadership voice at The MED13L Foundation. With nearly 20 years in nonprofit work, Phil shares what inspired him to ...
Community Checklist: Make Sure You are Making a Difference in MED13L
Episode Highlights1️⃣ Seek Support from Specialists – Learn which specialists to see: cardiologist, neurologist, developmental pediatrician, orthopedist, speech, occupational & physical therapists, and feeding speci...
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