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FARAFARA Cure FA

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.

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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. 

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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.
 
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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”. 
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Alexandria Bode

Name: Alexandria Bode
 
Age: 25
 
Where do you call home?: Southern Connecticut
 
Education (degree(s): What is a current goal you have with your education? How will FA add to your future [career]? I received my Bachelor’s degree in social work and I am now continuing on with my Master’s degree in social work to become a licensed clinical social worker. I have a unique perspective and I understand what it is like to struggle and live with a difficult situation.  I believe FA will help me gain insight with my clients. 
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