FA is rare. One has a better chance of getting a hole in one
on a Par 3 then being diagnosed with FA.

You have the same odds of dying of a heart attack while running a marathon then being diagnosed with FA. Yet with FA being rare and affecting 1 in 50,000 I was diagnosed with FA in 1992.


When I was told I had Friedreich's Ataxia, I didn’t know what that was or even how to spell it and honestly I didn’t care much, I was 12. I never thought I would end up in a wheelchair. Things like that don’t happen to me. I thought the odds were in my favor.Erin I played softball, soccer and basketball up until freshman year of high school when I became so off balance and uncoordinated. Although I had to stop playing and began to manage the teams, I never gave up. I was in the drama club, class chauffeur, prom court, skipped classes, got detention and was a typical high school kid. I also walked funny but life goes on.

During my 3rd year of college things were becoming unsafe, I had to start using a wheelchair. I was falling and spraining my ankle a lot, I was feeling embarrassed at the stares from outsiders and not wanting to carry books home to study or carry my tray in the cafeteria. At this point things became clear, I could choose to sit around, waste away and feel sorry for myself, or I could just carry on. I always chose to carry on.


I graduated in 2002 with a bachelors degree in psychology with a minor in sociology. During this time, I held a part time job, kept up with my academics, and a full social calendar. The day of graduation, 10 years after receiving my diagnosis, I rolled across the stage with pride and fear. Proud of my accomplishments but fearful of what the future might hold.

After college I took the next logical step in life, got a job and moved out of my parents' house. As I approach 21 years since my diagnosis, I still work full time, I still drive myself everywhere, I still live in my own apartment, I still keep up a busy social calendar. I have been skydiving kayaking, parasailing, ATVving, sailing, skiing, I trike, travel, fund raise for FARA. I keep in shape so that when we find the cure, I will be ready!