Community News

FARF Announces Head & Neck Cancer Collaboration with Stand Up To Cancer
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FARF Announces Head & Neck Cancer Collaboration with Stand Up To Cancer

Jan 20th, 2021

We've teamed up with Stand Up To Cancer and three partner organizations to fund $3.25 million in grants for treatment of FA-related head and neck cancer.

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Topics: Announcements


2020 Meeting Changes

2020 Meeting Changes

Apr 21st, 2020

Changes to the 2020 Scientific Symposium and Meeting for Adults with FA

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Topics: Announcements

Sewing Friendship and Love

Sewing Friendship and Love

By: Stephanie Griggs | Apr 9th, 2020

Several months ago, our daughter Bella undertook a very special sewing project: a t-shirt quilt. These weren't just any t-shirts, though. They were special and truly irreplaceable...

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Topics: Stories

Intoxicating Gratitude

Intoxicating Gratitude

By: Egil Dennerline | Mar 26th, 2020

Thirty years ago, I was told that I had an incurable terminal illness called Fanconi anemia (FA). Doctors told my father I wouldn't live into my 20s. I'm now 44.

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Topics: Stories

Finding Inner Peace in Chaos

Finding Inner Peace in Chaos

By: Kyle Tanner | Mar 20th, 2020

If anything positive comes from any of this, I hope it is that by recognizing our complete helplessness towards mortality, we begin to look upon everything that surrounds us as a reflection of our own

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Topics: Stories

Learning how to dance life

Learning how to dance life

By: Amy Frohnmayer Winn | Mar 20th, 2020

FA has been my greatest teacher. Through the fires of fear and loss, and the lens of a condensed time perspective, this illness has made me inescapably aware of the preciousness of life.

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Topics: Stories

Day 250+ in Quarantine

Day 250+ in Quarantine

By: Ashleigh Pinion | Mar 19th, 2020

We were so close to “normal,” but that got taken away with one phone call from our doctors.

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Topics: Stories