In September 2019, more than 200 researchers and clinicians in the FA community gathered in Chicago to share updates in research and care. Here are some of the highlights.
I’d like to tell you about a journey that changed my life forever. FA has taught me a couple of life lessons that you would expect to hear from a man late in his 90s.
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.
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.