The Voices of MED13L

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The MED13L Foundation

6 episodes

4 days ago

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, school transitions, therapy progress, and life as a teen or young adult. The series isn’t chronolo...

Life Sciences

Science

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Life Sciences

Science

Episodes (6/6)

The Voices of MED13L

Intro to Growing Up With MED13L

4 days ago

1 minute

The Voices of MED13L

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 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 MED13L parent, explaining why organizing records in one place can make care coordination, appointment...

3 weeks ago

11 minutes

The Voices of MED13L

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 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 surveys and data collection are essential for advancing research. Katie, Inon, and Vanessa explain...

1 month ago

24 minutes

The Voices of MED13L

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, 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 providers use the MED13L ICD-10 Code (Q87.85) to correctly document and track care. 2️⃣ Be Count...

2 months ago

30 minutes

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, 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 Syndrome and the global community coming together around it. We share the story of how the Foundation...

3 months ago

4 minutes

The Voices of MED13L

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 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 community, and continue the search for treatments and ultimately a cure. In this podcast, you’ll hear: Up...

4 months ago