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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.
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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.
One group of people we often think about but don’t often directly address is caregivers. All of the partners, parents, siblings, grandparents, and friends, we want you to know how vital you are.