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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 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!

Erin Kiernan

ErinKiernan1Name: Erin Kiernan

Age: 26

Where do you call home? I live west of Baltimore, Maryland.

Education (degree(s): Received my BA in Political Science at Edinboro University of Pennsylvania in May of 2012 and am still actively seeking employment.

What is your relationship status? Do you have children? Who do you live with? I am in a loving relationship with a wonderful, TAB (temporarily able-bodied) man. We really want children, especially me, but we are waiting a few years for the time to be right, financially. Our home is within my parents’ basement apartment due to finances right now.

What's a typical day for you? I am currently unemployed, but I am actively seeking job opportunities as well as trying to get interviews done. As for now, I have an aide come to assist me twice a day Monday through Friday with various activities of daily living. We perform professional work as well as having fun in the community.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed for 19 years. Technically, I was one of the first people in the state of Maryland to be diagnosed with Friedreich’s Ataxia with the blood test. On October 7th, 1996 by Kennedy Krieger hospital in Baltimore, Maryland. I am still seen by the neurologist, who helped me through the year or so of testing, at Johns Hopkins.

Billie Wells

BillieWells1Name: Billie Wells (JoJo)

Age: 26

Where do you call home? Farmington, Michigan

Education: I would like to be a physiologist, FA has humbled my life and opened my mind and made me less judgmental.

What's a typical day for you? A typical day for me is school or doctors appointments, physical therapy. Riding my Catrike has become a major part of my life.

How long have you known you are living with FA? I was diagnosed at age twelve. 

Jack DeWitt

JackDeWitt1Name: 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

LauraBethJacquinName: 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

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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