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At the FAdult Meeting in Chicago, Mary-Beth (a blogger & adult with FA), took over FARF's Facebook for a day and brought viewers behind the scenes at the meeting.
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This summer, I had the honor of working in Dr. Alan D’Andrea’s lab at the Dana-Farber Cancer Institute in Boston. The people who research our disease are just as amazing as the people who have it.
Well before her diagnosis of FA, our daughter was a model in resiliency for us. When she was finally born, we called her Mighty Mouse. Small, but resolute. Our model of resilience. Our Norah.
As Duncan's mom, I wish I could give him more days. I’d give him mine if I could. But that’s not possible. I can only resolve to give some of my time to try to raise funds for research.
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.
La Anemia de Fanconi se consideraba una enfermedad huérfana por lo poco frecuente y lo poco que se conocían sus causas, sus conexiones a otras enfermedades, y sobre la existencia de tratamientos.