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

X: @med13l_fdn

Contributors

Co-host

Kathleen Boychuck

Katie lives in Chicago with her husband Mike and their three sons, Mac, Jack, and Collin. After Collin was diagnosed with MED13L at 15 months, Katie joined the MED13L Foundation Board in 2022 and became Board Chair in 2024. She is committed to advancing research and supporting families. Katie served as race director for Cupid’s Run and is in-house counsel for a real estate management company. She holds a J.D. from DePaul University and a B.A. from the University of Illinois.

Co-host

Vanessa Dias

Here’s the shortened version:

Vanessa lives in New York with her husband and three children. After her youngest was diagnosed with MED13L syndrome in 2019, she became dedicated to advocacy and research. She joined The MED13L Foundation Board in 2021 and serves as Vice Chair. Vanessa is also the co-founder, Chair, and CEO of Able Athletics, an inclusive sports nonprofit. At The MED13L Foundation, she helped establish the Scientific Advisory Board, secured an ICD-10 code, and supported drug discovery. She also leads marketing, communications, and operations.

Guests

Guest

Inon Shampanier

Inon is a MED13L parent and a film director, living in Los Angeles with his wife Natalie and their children Ilan, Adam and Mali. Ilan received his MED13L-syndrome diagnosis in 2014, when he was 2 years old. The diagnosis spurred Inon on a journey to engage researchers and find therapeutic interventions for his son, but at the time MED13L research was still in its infancy. Several years later, with the formation of the MED13L Foundation, Inon found a passionate team of driven parents who were equally committed to finding a cure for MED13L, and to building a global MED13L community.

As a film director, Inon is best known for his mental health drama Paper Spiders, which he co-wrote with his wife Natalie. Inon is a graduate of the University of Southern California’s School of Cinematic Arts.

https://med13l.org/team-member/inon-shampanier/

Guest appearance on:

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

Guest

Rowan Dias

Rowan Dias is a student at Deerfield Academy, Class of 2027, and a proud sibling of a child with MED13L Syndrome. Inspired by his family’s journey and the mission of The MED13L Foundation, Rowan spent a summer internship helping launch The Voices of MED13L Podcast. His work focused on setting up the podcast platform and production process with the goal of expanding the Foundation’s reach to more families, researchers, and supporters. Rowan brings a unique sibling perspective to the community and is passionate about using his skills to help amplify the voices of those living with MED13L and drive progress toward connection, research, and hope.

Guest appearance on:

The Voices of MED13L Coming Soon!