Hola FAmilia ?? my name is Mary-Beth. At this year’s FAdult Meeting in Chicago, we did something special one day. I took over FARF’s Facebook on the first day of the FAdult Meeting to share a little behind the scenes...
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In my early high school days, I noticed that I had a knack for biology, and specifically, genetics. It has always made sense to me and it sparks joy in my life. I know what you’re thinking – very nerdy....
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Our Mighty Mouse Well before her diagnosis of Fanconi anemia (FA), our daughter Norah was a model in resiliency for us. Born at just five pounds and three ounces, she had the strongest heartbeat on the hospital floor, surprising us...
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Do you make resolutions for the New Year? I used to, but they wouldn’t last very long, so I found myself making new, monthly resolutions. This technique is a variation of a technique I learned in my twenties. My employer...
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We first learned something was wrong in 2004. I was a normal, healthy kid until I went to my pediatrician for my 13-year-old booster shot and blood draw. That was the first sign something was off. After a bone marrow...
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Introducción Mi especialidad empezó en 1927 como huérfana. Sin tener ninguna relación con nada conocido hasta entonces y sin conexiones a una comunidad mas amplia, lo que siguieron son 60 anos de abandono. En 1985, una valiente familia decidió que...
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