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2024 Research Updates

Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.

DNA strands

How to Be Present for Your Friends This Holiday Season

A number of articles have been circulating lately on this very topic at this time of year. A piece I wrote entitled, “Friend, I See You This Thanksgiving” was shared and read exponentially more than anything else I’ve written. This tells me...

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A Ninja from the Desert

In 2018, we managed to attend the German Fanconi Family Meeting. It was nice to meet FAmilies and find answers to many of our questions. In Germany, it was confirmed that Omar needed a bone marrow transplant as soon as...

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2020 Recipient of the Winn/Byrd Award: Maria Isabel Rodríguez Ribero

Congratulations to Maria Isabel Rodríguez Ribero! Maria is a mother, English teacher, master’s student, and community volunteer who lives in San Gil, Colombia. Now 33 years old, Maria was diagnosed at age 11. As a teenager, Maria remembers not understanding...

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A diagnosis of FA amidst a global pandemic

In hindsight, while I wouldn’t wish the way we found out about Elliott’s condition on anyone, it gave us time to reflect and be prepared to fight for Elliott. Included in the test results was a link to the Fanconi...

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Toxic Positivity: It’s okay not to be okay

What is toxic positivity? Toxic positivity is the excess and ineffective overgeneralization of a happy, optimistic state across all situations. This results in denial, minimization, and invalidation of the authentic human emotional experience. We see manifestations of toxic positivity around...

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Scientist Spotlight: Agnieszka Czechowicz

I also oversee a basic science research lab that is aimed primarily at understanding how blood-forming stem cells work and how they interact with their environment with a goal to then alter these interactions to improve the function of the...

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Join us at the upcoming #FCFSymposium and FA Adult Retreat September 19- 22 in Charlotte, North Carolina.
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