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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 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!


Stephanie Magness

Stephanie MagnessName: Stephanie Magness

Age: 39

Where do you call home? Santa Clarita, California

Education/Career: B.S. in Psychology; Minor in Religious Studies with a Concentration in Substance Abuse Treatment from Regent University (Not that I work in that field, lol).

How long have you known you are living with FA? I was misdiagnosed with Charcot Marie Tooth in 1994 after my scoliosis was found during 7th grade P.E. screening at school. That was right before the Friedreich’s Ataxia gene was discovered. Every doctor I had just seemed to go along with the initial diagnosis until my progression made it clear there was something else going on. So 10 years later, I finally ended up in Dr. Perlman’s office at UCLA where genetic testing confirmed FA. I was 22.

Sandra Johnson

Sandra JohnsonName: My name is Sandra Johnson!

Age: 56

Where do you call home? Scituate, Massachusetts

Education/Career: Graduated with a Bachelors Degree in Criminal Justice. I now own an Antique Consignment Shop in the town I live in.

Who’s in your family? Happily married for 30 years with two adult children, a son that is 29 and a daughter that is 26.

Jeremy Cowart

Jeremy CowartName: Jeremy Cowart

Age: 43

Where do you call home? Franklin, TN

Education (degree(s): Graduated from Middle Tennessee State University with a degree in Graphic Design.

Who do you live with? My wife and four children.

Corinne

CorinneName: Corinne

Age: 35

Where do you call home? Near the beautiful city of Lucerne, Switzerland

Education (degree(s): I did an apprenticeship as a businesswoman (in the office). After I did some further education in marketing, I quit my job and started to do what makes me happy – traveling.

Who do you live with? I live alone in an apartment.

Frank Van Linden

Frank Van LindenName: Frank Van Linden

Age: 38

Where do you call home? Antwerp, Belgium

Education (degree(s): I have a degree in marketing, but it was too hard to find a job due to my disease. That's why I studied multimedia. After my studies, I only worked in Winter, because I wanted to enjoy life and not being at my desk when the weather was good outside.

Who do you live with? I live with my girlfriend, every two weeks with her children and my dog.

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