Community News


How Our Family Channeled Grief Into Hope

How Our Family Channeled Grief Into Hope

By: Zachary and Rachel Gratz-Lazarus | Aug 13th, 2019

Well before her diagnosis of FA, our daughter was a model in resiliency for us. When she was finally born, we called her Mighty Mouse. Small, but resolute. Our model of resilience. Our Norah.

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A Mother’s Appeal

A Mother’s Appeal

By: Nancy Nunes | May 20th, 2019

As Duncan's mom, I wish I could give him more days. I’d give him mine if I could. But that’s not possible. I can only resolve to give some of my time to try to raise funds for research.

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Adulting with Fanconi Anemia

Adulting with Fanconi Anemia

By: Jasmine Bennetsen | Mar 19th, 2019

We first learned something was wrong in 2004. I was a normal, healthy kid until I went to my pediatrician for my 13-year-old booster shot and blood draw. That was the first sign something was off.

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Nunca más huérfana

Nunca más huérfana

By: Sharon Schuman, PhD | Mar 5th, 2019

La Anemia de Fanconi se consideraba una enfermedad huérfana por lo poco frecuente y lo poco que se conocían sus causas, sus conexiones a otras enfermedades, y sobre la existencia de tratamientos.

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 FARF co-founder speaks at 30th Symposium

FARF co-founder speaks at 30th Symposium

Jan 14th, 2019

Lynn Frohnmayer, FARF co-founder, has lost all three daughters to Fanconi anemia. At the 30th FA Scientific Symposium, she spoke about her family's story and three decades of progress in FA research.

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Heart of Celebration

Heart of Celebration

By: Mary-Beth Johnson | Jan 7th, 2019

Mary-Beth Johnson is a foodie and fantastic cook, a wife, sister and daughter, and a self-proclaimed over-sharer. She also lives with Fanconi anemia.

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Topics: Stories