Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.
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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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I am a poet, a writer, and a storyteller. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.
People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.