News

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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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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