Vanessa Dias

Vanessa lives in New York with her husband and three children. When her youngest child was diagnosed with MED13L syndrome in 2019, it sparked a deep commitment to advocacy, research, and community-building. She joined The MED13L Foundation Board in 2021 and now serves as Vice Chair, working to ensure families have access to the resources, information, and support they need.

A registered nurse with a background in critical care, Vanessa brings clinical insight and lived experience to her role. She is also the co-founder, Chair, and CEO of Able Athletics, an inclusive sports nonprofit created by her children—rare siblings determined to make athletics more accessible for individuals with disabilities.

At The MED13L Foundation, Vanessa helped establish the Scientific Advisory Board, led the initiative to secure an ICD-10 code for the syndrome, and supported early drug discovery that identified Naprosyn as a potential therapeutic. She also plays a key role in the Foundation’s marketing, communications, and operations—working every day to amplify the voices of those affected by MED13L.