Community News


Expeditions

Expeditions

By: Robin Lewis | Nov 6th, 2019

I’d like to tell you about a journey that changed my life forever. FA has taught me a couple of life lessons that you would expect to hear from a man late in his 90s.

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Topics: Stories

A Day at the 2019 FAdult Meeting with Mary-Beth

A Day at the 2019 FAdult Meeting with Mary-Beth

By: Mary-Beth Johnson | Oct 18th, 2019

At the FAdult Meeting in Chicago, Mary-Beth (a blogger & adult with FA), took over FARF's Facebook for a day and brought viewers behind the scenes at the meeting.

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Topics: Stories

A Pursuit in Genetics

A Pursuit in Genetics

By: Anne Starner | Oct 9th, 2019

This summer, I had the honor of working in Dr. Alan D’Andrea’s lab at the Dana-Farber Cancer Institute in Boston. The people who research our disease are just as amazing as the people who have it.

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Topics: Stories

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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Topics: Stories

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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Topics: Stories

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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Topics: Stories