Hello everyone, my name is Alyx Holliday. I was diagnosed with FA when I was five, so I don’t remember much about it. My mom said it’s a good thing I don’t remember much because what I had to go through was a lot. When I was younger I used to play baseball. I played for 17 seasons I was 14 years old when I had to stop to have the spinal fusion surgery I’m sure some of you have had it too. My adaptive P.E. teacher and my physical therapist taught me a lot of great ways to keep myself strong for all the upcoming trials.
My senior year I decided to get more involved, so I did the Mr. Salem Pageant. I had to learn two dance routines and I had to come up with a talent, so I decided to do a comedy routine. In June I went to prom and had a grand time dancing the night away. I learned that I really love to dance. Also in June I graduated with honors from my High School and I got to walk across the stage.
Meet the Community
You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below. New Meet the Community interviews are posted every Monday, so be sure to visit often. Please e-mail
FARA Ambassadors
The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.
Meet the FAmily!
Alyx Holliday
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- Category: Meet the Community
Alena and Alisa Wolfson
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- Category: Meet the Community
Name: Alena Wolfson
Age: 18 years old
Where do you call home? I live in Glendale AZ
Are there any others with FA in your family? My younger sister, Alisa. (read Alisa's interview below)
Describe your transition from walking to walker/wheelchair. It was very sudden. I got sick with a respiratory virus, then when I got better I wasn’t able to walk anymore.
Erin Pieper
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- Category: Meet the Community
Name: Erin Pieper
Age: 27
Where do you call home? St. Louis, Missouri
Education (degree(s): Bachelor of Arts in Psychology and Sociology
What is your relationship status? Do you have children? I'm a single Mom to the sweetest three year old boy, Eli! The best way to describe my living situation is by saying I have two homes. I live alone in a house that I stay at when Eli goes to his Dad's. It's a small slab home (no stairs) which is very easy for me to maneuver around in. When Eli is with me, we've been staying at my parents just for that little extra help I may need. Hopefully, within the next six months I can start transitioning Eli back to my house. He knows my do's and don'ts; what I can and can't do and helps me out without me even having to ask!
Conal Alexander
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- Category: Meet the Community
Name: Conal Alexander
Age: 35
Where do you call home? Christchurch, New Zealand
Education (degree(s): I have studied computer aided design at the local polytechnic and have two diplomas. I do not work.
What is your relationship status? Do you have children? Who do you live with? I am single with no children. I live with my brother (also with FA).
What's a typical day for you? My support worker arrives early and I have breakfast in bed, then I rise and have a shower. My support worker leaves and then I take the dog for a run (I have a handcycle), then usually have a coffee with my parents. Then I have dinner while watching TV. I spend the evenings playing computer games until late.
Dave Arnold
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- Category: Meet the Community
“You cannot change the cards you are dealt, just how you play the hand” - Randy Pausch
My name is Dave and I live in Grand Rapids, MI. I am 30 and I was diagnosed with FA when I was 26. I was married in August 2014 and we are expecting our first child in September 2015. I am very fortunate to still be able to do most things independently. I am also very fortunate to have a wonderful wife and very supportive family & friends to help with some of the things I cannot do independently.