Carolina Sommer
Carolina is the CEO/Founder of Born a Hero Research Foundation, Founder of the Seattle Rare Disease Fair, and Co-Founder of the NW Rare Disease Coalition.
Born a Hero studies 15 FGFR Syndromes and has established a patient centered research registry, FGFR Syndromes Research Registry (fgfr.iamrare.org).
The NW Rare Disease Coalition primary focus is passing and supporting policy on both state and federal levels (such as WA Rare Disease Advisory Council, Newborn Screening, Whole Genome Sequencing, Genetic Testing Reimbursement and Complex Care Coordination). The NW Rare Disease Coalition is passionate about Collaboration, Genetic Testing, and Cell and Gene Therapy Education.
Carolina is the Co-Founder of the ABC Kind Program (a national curriculum that teaches kids about loving differences, including medical differences). Carolina is also the Author of the Lucy’s Journey books. Carolina is a member of; Rare Disease Access Working Group with EveryLife Foundation, We Work for Health, Voters for Cures, the WA Health Access Network, among other groups.
Carolina was born in Medellin, Colombia and has lived in the Seattle area since she was 8. She received her undergraduate degree in Theoretical Math from the University of Washington and was an intern at NASA's Jet Propulsion Laboratory in Pasadena, California. Carolina is a public speaker, lobbyist and a certified event planner. Carolina’s favorite thing to do is spending time with her family. In her free time, she enjoys painting, weightlifting, and playing the guitar. In 2012 Carolina gave birth to her hero Mariana, who has Pfeiffer Syndrome.