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.

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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.