News

It Takes a Village to Save a Life: Katherine’s Story

“If I had waited another six months, my story wouldn’t be the same.” Katherine was born into a world shaped by loss. Her older sister, Gracie, was diagnosed with Fanconi anemia (FA) shortly after the family moved to the United...

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Behind the Research: Benilde García de Teresa

Institution: Laboratorio de Citogenetica, Instituto Nacional de Pediatría, Mexico City, México Area of expertise: Medical genetics, dysmorphology. My work:   I am a medical geneticist from Mexico City, introduced to the field of Fanconi anemia (FA) by my mentor, Dr. Sara Frias, whom...

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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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