News

Celebrating Fatma Issak, 2025 Winn/Byrd Award Recipient

A Global Commitment to Care Born in Zanzibar and now living in New York, Fatma has dedicated herself to improving how healthcare is experienced, not just delivered. She currently works as a medical scribe at an OB-GYN clinic, supporting patients...

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When Childhood Meets FA: Emily’s Story of Courage

Emily is much more than her diagnosis. She’s an athlete and an artist who loves playing soccer and basketball. She creates paper dragons for her friends, enjoys drawing, and is a proud Swiftie.

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Coley’s Cause: Decades of a Community Committed to Progress

What started as a small local fundraiser in memory of an incredible little girl has evolved into a powerful movement uniting friends, family, neighbors, and supporters in pursuit of a future with better outcomes and brighter hope for families affected by FA.

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Our Wild Child, Our Rockstar: Annzie’s Story

When Annzie was six, what started as a routine well visit turned our world upside down. She had always been small for her age, but that visit revealed more: recurring infections and low platelet counts that led to urgent bloodwork. We were referred to hematology, and that began our FA journey.

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My Unexpected Journey With FA

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.

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Behind the Research with Meng Wang

In this edition of our Behind the Research series, we’re excited to introduce Dr. Meng Wang, a physician-scientist at Cornell University whose work is shedding light on a little-known but powerful driver of DNA damage in Fanconi anemia: formaldehyde. Dr....

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