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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 info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

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!


Bridget Downing

BridgetDowning1Name: Bridget downing

Age: 29

Where do you call home? Charleston, South Carolina

Education (degree(s)): I have a bachelor's degree in elementary education from Elon University and a master's degree in science and math for teachers from the College of Charleston.

What is your relationship status? Who do you live with? I am single and live alone.

What's a typical day for you? I teach kindergarten, so my alarm goes off at 4:45 and is very busy as you can imagine! The school day ends at 2:25, but I always have work to do after school. I try to leave at a reasonable time most days (between 4 an 5) so I can go to physical therapy, work out on my own, or go to happy hour. 

Brian Bianchi

Name: Brian Bianchi
 
Age: 21
 
Where do you call home? Newington, Connecticut. My parents are moving to South Carolina (Charleston area) in about two months, so that will probably become my new home.
 
Education: I am a senior at the University of Hartford (GO HAWKS!). I am majoring in Computer Science and double minoring in Mathematics and Multimedia Web Design. I am very passionate about technology and love to create things and solve problems.
 

Asad Rafi

Name: Asad Rafi
 
Age: 45
 
Where do you call home? Karachi, Pakistan
 
Education (degree(s): I could not pursue with my higher studies after I was diagnosed with FA at the age of 17. I was very much interested in learning computers and joined IBM Pakistan where I worked for 15 years. I love to write and my articles have been published in various papers and magazines including articles on FA. I have recently written my first book titled “Steel Wheels”. 

Alyx Holliday

AlyxHHello 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. 

Alena and Alisa Wolfson

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. 

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