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FARAFARA Cure FA

Marc Mailloux

Marc 4Name: Marc Mailloux

Age: 51

Where do you call home? Cohoes, NY

Education: 12th grade

Who do you live with? Do you have children? Single and I have one daughter.

What's a typical day for you? I've worked part-time at Wal-Mart for 18 years.

How long have you known you are living with FA? Diagnosed March 18th, 1985, just after turning 17.

Describe your transition from walking to walker/wheelchair: I started using a wheelchair at 30. In 1997, right after my daughter was born, I finally gave in to using a wheelchair. This was a very tough time for me because walking was becoming very difficult and I was falling quite a bit.

What do you like to do to stay active and what type of exercises work for you to stay strong? Practicing a standing frame daily.

Marc CollageDo you have any hobbies or special interests? Music

When FA gets you down, what do you think/do to feel better? Working out with weights.

What is a favorite motivational quote of yours? Believer

What is a piece of advice that someone with FA has given you that encourages and inspires you? We have HOPE.

What is the first thing you want to do when a cure/treatment to FA is found? Play hockey (I played when I was younger, and I was a goalie at diagnosis. Though my doctor suggested I quit then, I continued to play for 5 more years)!

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I do the best I can.

Tell us a little more about you... Originally, I felt that if I just "worked-out" with weights and tried to stand that I was doing pretty good. I was wrong. (It takes a lot for me to admit that!) I learned that I needed to make some changes in my routines if I was ever to see any real progress forward. The changes (eating better, more water, trying different exercises), although really minor, were so difficult for me at first. I really resisted change. (Because I thought, "This is nuts!") But after actually apply these simple small changes into my routines. I started to notice some positive changes within days.

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