When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that's when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.
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Orion Marx
President
Father of Avery
A longtime resident of Sarasota County, Fla., Orion volunteers with numerous local foundations and organizations. Following years of experience in the economic sector, Orion founded Atlas Financial, a firm which helps clients with financial, estate and business owner planning. He and his wife, Lisa, have two daughters, Avery and Violet, and two rescue dogs. An avid sports fan, Orion trains for and participates in various multi-sport competitions, including running, biking, and kayaking. In 2010, he turned these sports challenges into a way to raise funds for Fanconi anemia research. “Team BrAvery” is a fundraising team named for his daughter, Avery. The team takes on extreme challenges such as running two marathons in one weekend, biking across seven states in a day, and pushing a 3,100 pound truck around a two-mile track.
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The Family Retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.
By Cecilia Córdoba, mother of Agustina Milagros Kaucic When my daughter Agustina was 2 and a half years old, our lives changed forever. It was very difficult to reach a diagnosis. And when we finally received it, it was devastating....