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Meet the CommunityYou 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.
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.
Name: Trim Gjelaj
Age: 31
Where do you call home? I am from Peja, Kosovo, but grew up in Papenburg, Germany.
Education/Career: I finished school for design in Pepenburg, Germany.
Who do you live with? I live with my mother and two brothers. What’s a typical day for you? I wake up. Drink coffee, have breakfast, do exercises, and whatever is my plan is to do for the day.
Name: Cody Ryan
Age: 33
Where do you call home? Lexington, Kentucky
Education/Career: Bachelor’s degree in journalism from the University of Kentucky
What’s a typical day for you? I spend most days reading and watching television.
Name: Alicia Aragon Cabanas
Age: 46
Where do you call home? Talavera de la Reina (Toledo), Spain
Education/Career: Diploma in Social Work. Right now with the current situation we are living in, what you least think about is looking for work.
How long have you known you are living with FA? Everything started when I was 13 years old when my mother took me to the doctor because she compared me with my sisters and she noticed something strange; I fell a lot, I had difficulty walking in the dark, etc. I was referred to a doctor in Madrid who diagnosed me with FA.
Name: 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.
Name: 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.
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