“Despite a rare, incurable disease, Amy Frohnmayer Winn ran joyfully through her limited time on earth, making the most of every mile—and every moment.”
Click here to read the full article about Amy Winn in Runners World magazine, out 6/12/2017.
If you asked me for a defining memory of our journey, it might surprise you. Some of my most cherished moments were the long hospital stays — the time I got to spend one-on-one with Hunsley, free from the distractions of the world.
The Retreat for Adults with FA takes place every fall in a different city. It’s an opportunity for individuals with FA ages 18+ to meet other adults with FA, learn about medical and research updates, attend support sessions, and participate...
When Annzie was six, what started as a routine well visit turned our world upside down. She had always been small for her age, but that visit revealed more: recurring infections and low platelet counts that led to urgent bloodwork. We were referred to hematology, and that began our FA journey.