Friedreich's Ataxia Research Alliance

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!

Jack DeWitt

JackDeWitt1 Name: Jack N. DeWitt

Age: 15

Where do you call home? Southeast Michigan (Go State!)

What is a current goal you have with your education? I’m a high school sophomore this year. I would like to attend Full Sail University for a degree in digital graphics.

What is your relationship status? Who do you live with? I am currently single (unfortunately) and live at home with my Mom, Dad and brother.

What's a typical day for you? Wake up, go to school, come home, do homework, go to bed. Wash. Rinse. Repeat.

How long have you known you are living with FA? (When and how were you diagnosed?) I’ve known I have FA for 5 years, since I was 10. Before that, I was misdiagnosed with cerebral palsy because I was a preemie but then we noticed the progression.

Are there any others with FA in your family? No.

Laura Beth Jacquin

LauraBethJacquin Name: Laura Beth Jacquin

Age: 28

Where do you call home? Georgia

Education: I graduated from Berry College in 2009 with a Bachelor's degree in Interdisciplinary Studies concentrating in education, psychology, family studies and art. Originally, I was most interested in working with younger students. However, after student teaching in preschool, elementary and middle school, I have made the decision that I like working with older kids. Unfortunately, during my last semester before graduation, my optic nerves began degenerating and over several months time I incurred a substantial loss of vision. This prevented me from being able to teach. I'm hoping for a cure so that that I will someday be able to resume my intended career.

Evan Luebbe

EvanLuebbe1 Name: 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

BridgetDowning1 Name: 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.