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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Helen Potts
Event Project Manager
Born and raised in Oregon, Helen comes from a large and close-knit family. Inspired by working with children, Helen pursued a degree in Family and Human Services at the University of Oregon. Her drive to work for a cause she cares about led her to FARF. “I’m excited about the work and the environment. The team is incredibly talented and passionate. There are so many people who play a role in the FA community; I’m honored to contribute to the larger picture.” Helen brings her positive energy and can-do attitude to the team and oversees everyday operations of FARF, as well as the planning and execution of all conferences and meetings. She’s an expert organizer and natural people-person who is goal-driven. In her free time, you might find Helen trekking up a hillside, running on the trails, or curled up with a book or Netflix.
What are three words you aspire to embody?
Kindness, patience, and courage.
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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.