Free Daily Podcast Summary
The Voices of MED13L: Daily Summaries Delivered
by The MED13L Foundation
"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: @med13lfoundationX: @med13l_fdn
Latest Episodes
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- 2 weeks ago9 min
Sibling Takeover: Tenley on Growing Up with Addie
In this first Sibling Takeover episode, host Christian Dias hands the microphone to Tenley, age eleven, whose older sister Addie has MED13L syndrome. Christian's own sister, Elle, has MED13L too. The Sibling Takeover series gives the brothers and sisters of people with MED13L a chance to share the journey in their own words. Christian and Tenley trade stories about growing up alongside a sibling with MED13L. They talk about the games they play together, like backyard volleyball and Uno, and a...
- Jul 17, 202631 min
Growing Up With MED13L: Life at 18
In this episode of Growing Up With MED13L, we go back to the very beginning with Belen Fernandez Crespo, mother to 18-year-old Nacho, joining us from Spain. Belen knew something was different when Nacho was still a baby, long before anyone would listen. He went undiagnosed for eleven years, and when the name MED13L finally arrived, it brought her something unexpected: relief. In this honest and moving conversation, she shares what those early years were really like, from a little boy who was ...
- Jun 15, 20261h 5m
MED13L Research Update: Where We Are and Where We’re Headed.
In this special research update episode of Voices of MED13L, Rowan Dias opens with reflections from the World Orphan Drug Congress and the MED13L Foundation’s first year participating in the Million Dollar Bike Ride before introducing a recorded community update with Dr. Ricardo Ramirez, Chief Scientific Officer of The MED13L Foundation. Dr. Ramirez walks families through the Foundation’s current research priorities, including natural history studies, adult outcomes, community surveys, biomar...
- May 11, 202623 min
May is MED13L Awareness Month
An Honest Look at MED13L, Our Community, and the Foundation Behind It MED13L Awareness Month Special | May 2026 This Awareness Month, host Vanessa Dias gets honest — about the spectrum of MED13L, the families the foundation hasn't yet heard from, and what it actually looks like to run a rare disease foundation as a volunteer parent doing the work between therapy drop-offs and bedtime. She also pulls back the curtain on the foundation itself: a small group of volunteer parents, most of them mo...
- Apr 16, 202636 min
Growing Up With MED13L: Life at 14
Growing Up with MED13L: Life at 14 In 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 Klassen, who share what life looks like today for their 14-year-old daughter, Caitlynn. They offer a candid glimpse into Caitlynn’s world—from her communication journey with AAC and experiences in school to friendships, family dynamics, and increasing independence. Chelsea and Vern also s...
- Mar 13, 202631 min
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 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 o...
- Mar 3, 202642 min
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 MED13L In this powerful and informative episode of Voices of MED13L, Vanessa sits down with Abigail Sveden, MS, CGC, a genetic counselor at the Boston Children's Hospital and member of the Rosamund Stone Zander Translational Neuroscience Center (TNC). Together, they unpack the critical importance of the MIND Study — MED13L Syndrome Investigation of Natural History and Development — and what it means for families today and for t...
- Feb 12, 20261h 0m
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 episode, as we continue our Growing Up with MED13L series, where families share what daily life looks like at different ages and stages. In this episode, we’re joined by MED13L parent Anna Fracalossi, mom to Elisa (11). Anna shares their long diagnostic journey—first noticing deve...
About 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: @med13lfoundationX: @med13l_fdn
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