Being someone with FA, I should be, but never am prepared for the support and caring I feel from everyone at a FARA fundraiser. The Flatbread’s Pizza kickoff to the Race for Matt and Grace in Providence, RI last week was no exception. 

My husband, Dave, and I get in the car to pick up our friends, Erin and her aunt Maureen. I don’t know how, but we are late half the time…I call it FA time (even though other folks I know with FA are always on time, I like to blame it on FA). So we are twenty minutes late (or not late for FA time). Of course Erin and Maureen were very gracious about our tardiness. Erin may have FA, but FA time is not one of her symptoms.

I am a wife, a mother, a good friend. And an engineer for 40 hours a week. And, oh yeah, I have a disability too. I was diagnosed (when I was a newlywed!) in 1999 at age 30. It took me years to get the correct diagnosis because my symptoms weren’t very severe. My neurologist was happy we had a diagnosis; me, not so much! 

I try not to let FA define me. I am in a wheelchair full time; and when people first meet me, they doubt my abilities. And there are many things that I can’t do or that take a crazy amount of time for me to try to do. But I also work full time, go to the gym, bike, do laundry, and make toast (& order delivery pizza) as well as everybody else. And even though I have a slur, my kids seem to fully understand me when I start hollering about dirty laundry on the floor.

Barry Rice has had to adapt to Friedreich’s Ataxia in every aspect of his life in Dublin, Ireland: moving his family to a house next door to his parents; now working from home, adjusting his family business ShutterCo; and becoming more conscious of his health, being forced to find new ways to exercise. In his teen years, he began noticing subtle signs of weakening coordination. After seven years of seeking the cause of his symptoms, Barry was diagnosed with FA, slight scoliosis, and cervical dystonia in January 2013 at the age of 32.

My name is Sean and I live in Sacramento, California. I love it here. Outside of four years of college and one year in Germany, Sacramento has been home for me since I was 17. I am 32 now. I can be silly, I play pranks on people I love, I can’t seem to do or talk about anything without making jokes, and I smile and laugh often.

I grew up with an interest in acting, the stage, and the piano. I wanted to be famous and I wanted to be talented. I was never much interested in sports – just wasn’t my thing. I’m the youngest of six kids and the siblings I remember living with growing up were all active and involved in sports. Our parents were supportive in anything we wanted to do and left it up to us to choose what we wanted to try and what we wanted to avoid (mostly – avoiding chores was never an option). They found ways to successfully juggle their careers, church life, chores, school, kids, and all the things we wanted to be involved in.