We've teamed up with Stand Up To Cancer and three partner organizations to fund $3.25 million in grants for treatment of FA-related head and neck cancer.
Changes to the 2020 Scientific Symposium and Meeting for Adults with FA
Several months ago, our daughter Bella undertook a very special sewing project: a t-shirt quilt. These weren't just any t-shirts, though. They were special and truly irreplaceable...
Thirty years ago, I was told that I had an incurable terminal illness called Fanconi anemia (FA). Doctors told my father I wouldn't live into my 20s. I'm now 44.
If anything positive comes from any of this, I hope it is that by recognizing our complete helplessness towards mortality, we begin to look upon everything that surrounds us as a reflection of our own
FA has been my greatest teacher. Through the fires of fear and loss, and the lens of a condensed time perspective, this illness has made me inescapably aware of the preciousness of life.
We were so close to “normal,” but that got taken away with one phone call from our doctors.