The Voices of MED13L

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

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 s

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

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 — ab

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 Vane

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 fel

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 Sve

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

Growing Up With MED13L: Life at 12

Growing Up With MED13L: Life at Age 12 In this episode of The Voices of MED13L, we launch our new Growing Up With MED13L series with a powerful and honest conversation t

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 ongo

Citizen Health: 13 Minutes With MED13L

Mini Episode: 13 Minutes with MED13L Host: Katie Boychuck, Chair of the MED13L Foundation In this first-ever 13 Minutes with MED13L mini-episode, Foundation Chair Katie

Introducing Phil Buta & The Importance of Surveys

Episode 2: Introducing Phil Buta & Why Surveys Matter In this episode, we welcome Phil Buta, the newest leadership voice at The MED13L Foundation. With nearly 20 years i

Community Checklist: Make Sure You are Making a Difference in MED13L

Episode Highlights 1️⃣ Seek Support from Specialists – Learn which specialists to see: cardiologist, neurologist, developmental pediatrician, orthopedist, speech, occup

The Voices of MED13L

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

The Voices of MED13L Coming Soon!

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 Boy