Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

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!


Evan Luebbe

EvanLuebbe1Name: Evan Luebbe

Age: 19

Where do you call home? Cincinnati, OH

What is a current goal you have with your education? I graduated from Lakota High School in May of 2015. I’m now attending Miami University (OH) and majoring in Forensic Criminal Justice with a minor in Psychology.

Who do you live with? I live with each of my parents and brother, Graham.

What's a typical day for you? I go to school on Monday and Wednesday and have an aide with me for 4-5 hours on the days when I don’t have school. I go to the gym 2 times per week to lift weights and I also have exercises I do at home every day. It’s important to me that I stay strong. I can still walk very short distances with my Dashaway walker, so I try to walk as much as possible.

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. 

Page 35 of 43

SHARE

FacebookTwitterLinkedInYoutube

 

Archived in
  the Ambassador Blog


Site Map     Privacy Policy     Service Terms     Log-in     Contact     Charity Navigator