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 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.

Add a comment
Read more: Evan Luebbe

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. 

Add a comment
Read more: Bridget Downing

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.
Add a comment
Read more: Brian Bianchi

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”. 
Add a comment
Read more: Asad Rafi

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. 
Add a comment
Read more: Alexandria Bode
Page 23 of 31




Archived in
  the Ambassador Blog