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How a different perspective offers lessons to learn

Friedreich’s ataxia (FA) can feel incredibly isolating. I’m fairly certain that rings true for most people going through life with a rare disease. Because FA is so rare, affecting only about 1 in 50,000 people in the U.S., few folks have even heard of it, much less understand…

How to make life with FA better with effortful fun

About 12 years ago, I went dog mushing with my local disabled sports organization, Northeast Passage. It was a once-in-a-lifetime experience. Those of us who participated have various disabilities, and we got to learn a bit about mushing a team of dogs. Then we got to try it…

FA makes a good hair day harder, but I revel in them

Last week, I took a slow-motion fall. While transferring from bed to my wheelchair, I tried to reach for something — so I could be quicker — and landed on the floor. I am no longer able to transfer from the floor to my wheelchair. Wendy, my service dog, can…