The Voices of MED13L

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...

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 als...

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 experienc...

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 mi...

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 S...

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...

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 titled “Life at 12.” Host Vanessa is joined by fellow MED13L parent Katie Johnston , mom to Addie, a bright, confident 12-year-old living with MED13L syndrome. Katie shares Addie’s journey to diagnosis at age nine and reflects on w...

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, s...

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 Boychuck walks families step-by-step through Citizen Health —a secure, easy-to-use platform the Foundation is recommending to help parents centralize their child’s medical information. Katie shares openly as both a leader and a MED...

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 in nonprofit work, Phil shares what inspired him to join our community and how he hopes to support fundraising, research, and long-term strategy. We also break down one of the most important topics for every MED13L family: why...

Episode Highlights 1️⃣ Seek Support from Specialists – Learn which specialists to see: cardiologist, neurologist, developmental pediatrician, orthopedist, speech, occupational & physical therapists, and feeding specialists. – Contact your local school district early for early intervention services. – Visit our Glossary for common medical and therapy terms: med13l.org/resources – Ensure all pro...

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, what drives us, and why this podcast exists. Whether you're navigating a new diagnosis, supporting a loved one, or working in research or medicine, this episode offers a personal and accessible introduction to MED13L...

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 Boychuck , Chair, and Vanessa Dias , Vice Chair. Both are parents of children with MED13L, and their personal journeys have set them on a path to push for research, create change for a better future, foster connection within the commun...