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FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


FA Hangouts - January 2021

20210114_123951_0000With many of our usual activities on hold for now, we want to know: how are you staying busy at home?

Join Noelle and Allie for this discussion. Share your hobbies and maybe find a new one! January 26 and 27!

Cody Ryan

cody-ryanName: 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.

Alicia Aragon Cabanas

alicia-aragon-cabanasName: 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.

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.

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