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

Guest

Katie Johnston

Katie Johnston, MBA, RICP® (She/Her) is a Wealth Steward for women decision-makers based in New York and the proud mom of two daughters, Addie and Tenley. Addie was diagnosed with MED13L syndrome, a journey that has deeply shaped Katie’s commitment to advocacy, awareness, and research within the rare disease community.

Katie supports the MED13L Foundation through active participation in research initiatives and by generously sharing her family’s story with others navigating a similar path. Through both her personal experience and professional background, she brings a thoughtful, empowering voice to the community—helping families feel informed, supported, and less alone.

Guest appearance on:

Growing Up With MED13L: Life at 12