Community News

2023 Research Updates
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2023 Research Updates

Apr 10th, 2023

On this page you’ll find the latest updates on FARF-funded research and activities, updated on an ongoing basis.

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Topics: Announcements


Exit Interview

Exit Interview

By: Sharon Schuman, PhD | Jun 17th, 2020

It seemed like the more research FARF funded and the more we learned, the more tantalizing was the possibility that somewhere out there might be a drug that could turn FA into a manageable condition.

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Topics: Stories

Caregiving During Covid

Caregiving During Covid

By: Allison Breininger | Jun 5th, 2020

The fear, concern, vigilance, and practices that the world is currently struggling to adopt have been part of your daily life and mine for years.

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Topics: Stories

One donor honors her brother’s memory and helps find a cure for her niece

One donor honors her brother’s memory and helps find a cure for her niece

May 26th, 2020

Through donating to FARF, I hope and pray to find a cure for Emily and all those who suffer from this terrible disease.

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Topics: Stories

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