News

FA Adult Retreat & Scientific Symposium: A Homecoming for Patients, Families and Researchers

Hello, this is FA Adult Council member Lexi Marshall with a recap of the FA Adult Retreat in Charlotte, North Carolina. To back up, I attended my first FA Adult Retreat and Scientific Symposium as a newly diagnosed person with...

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The Painted Turtle Brings Family Fun to Full Color

Since 1991, the FA Family Retreat has been a tradition that surprises, supports, and uplifts FA families worldwide. Whether families travel from within the United States or across the globe, the retreat offers connection, educational sessions, resources, expert consultations, and...

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Katherine De Los Santos Receives the 2024 Winn/Byrd Award for Adults with FA

Katherine (middle) with 2023's recipient Ana Tabar (left) and FCF CEO Isis Sroka (right) The De Los Santos family first experienced the complexities of Fanconi anemia as they endured the devastating loss of their daughter, Gracie, who passed away from...

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From Shock to Strength: Our FA Diagnosis

It took me weeks to come to terms with the fact that there were no easy answers. I couldn't change the past or the diagnosis, so I focused on educating myself and becoming Tinslee's biggest advocate. We underwent all the necessary tests, scans, and procedures, and spent a year going in for lab work and check-ups.

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Behind the Research: Andrew Deans

My lab’s vision for the next five years is to apply what we have learned to develop molecules that can alter FA protein behavior. These could be used to treat cancer or alter gene editing outcomes.

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Inspiration Through Education: Omar’s Journey with Fanconi Anemia

In a world where every day presents new challenges, my 11-year-old son, Omar, from Oman, stands out for his resilience and eagerness to raise awareness about Fanconi anemia. Diagnosed at just five years old, we truly believe his journey is a testament to hope and the strength of the human spirit.

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