Events

Retreat for Adults with FA

Sep 25th, 2025, 03:00 PM - Sep 28th, 2025, 12:00 PM

The Retreat for Adults with FA takes place every fall in a different city. It’s an opportunity for individuals with FA ages 18+ to meet other adults with FA, learn about medical and research updates, attend support sessions, and participate in voluntary research studies. We are excited to continue providing education and support sessions for caregivers.

This retreat is held in conjunction with our annual Scientific Symposium. Attendees from both meetings share meals together, including the annual banquet dinner. Adult Retreat attendees are welcome to attend Symposium sessions as well.

Event: Meetings

Retreat for Adults with FA

The Latest

News & Events

2025 Research Updates

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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Living With FA, Loving Beyond It: Israel’s Story

Israel endured so much in his short life. But even in the hardest moments, he brought so much light. One of my favorite memories from his transplant journey was how he never went by his real name. The first doctor we saw when he was admitted asked him his name, and Israel replied, “Batman.” From then on, he cycled through names from his favorite movies: Randall, Pascal, and eventually Lewis.

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In Loving Memory of Imroze Marzban Ardeshir

April 15, 1983 – December 27, 2017By Daisy & Marzban Ardeshir The story below was shared by Imroze’s parents, Daisy and Marzban Ardeshir, in remembrance of their daughter’s strength, grace, and enduring spirit. Our second child, Imroze, was diagnosed with...

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