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.
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.
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.
The Fanconi Anemia Research Fund (FARF) is closely monitoring the updates regarding COVID-19, a respiratory illness caused by a new coronavirus, as well as potential implications on the FA community.
Bill McCorey has spent the last decade climbing mountains all over the world to raise funds for FA research. In 2020, he takes on his final challenge.
Growing up and taking control of your care is one of the most important - and challenging - steps you will take in adulthood.