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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!


Noah Griffith

NoahHi! My name is Noah Griffith, and I am 18 years old. I live near Auburn, Alabama, and I am a freshman in college at Southern Union! I plan to major in journalism in hopes of becoming a sport's writer. I have always had a passion for sports, particularly with baseball and basketball,
and this career is how I want to continue to be in the sport's world since playing is not an option anymore.

I was diagnosed with Friedreich's Ataxia in April of 2018, just before my 17th birthday. The time leading up to my diagnosis was rough. I had started experiencing symptoms with no explanation as to what was happening. When I noticed running and lifting weights was getting
more difficult, I began visiting many local doctors and therapists (and most of them had no idea what FA was), until I was finally sent to a neurologist at UAB who diagnosed me.

Marina Deszo

MarinaHello everyone!


My name is Marina Deszo, and I am 30 years old. I am from a city near Sao Paulo, Guarulhos, in Brazil. My family was there, but I moved on to Sao Paulo city living, almost, on my own. I share a place with roommates since the beginning of college, and I am still there.

Talking about AF, I was diagnosed with 17, but I have had symptoms since I was 10. It was a relief to find a cause for the stranger way I felt about my body, but also anguish for an incurable condition. Fortunately, I was surrounded by family and very good friends, that always give me the strength to move on, besides all the struggles that we all patients deal with. Something like balance, walk, and strength problems.

Collin Straathof

CollinName: Collin Straathof

Age: 26

Where do you call home? the Netherlands

Education degree(s): Bachelor Sports marketing/Commercial economy. I work as an online marketer. This work is good for me, despite the difficulties that FA entails. I work three days at the office and also do some work at home in the field of online marketing.

Who do you live with? I live with my parents but often live with my girlfriend.

Sam and Rebecca Hill

SamName: Sam Hill

Age: 16

Where do you call home? Annapolis, Maryland

Education: Current grade - Junior in high school

Who do you live with? My parents and two sisters

What's a typical day for you? I go to school every day and spend my weekends doing homework and spending time with my family.

How long have you known you are living with FA? I was diagnosed by a neurologist in November of 2015

Are there any others with FA in your family? My younger sister Rebecca has FA as well.

Breaunna Hoffman

BreaunnaHi everyone, I'm Breaunna Hoffman. I am from Pennsylvania. I'm 24 years old, and I was 15 when I was diagnosed with Friedreich's ataxia. Otherwise known as FA. I never really showed symptoms of FA growing up, except I was "clumsy." At 15, I developed severe scoliosis in my lower back. Doctors ran tests and diagnosed me with FA. Growing up I avidly played sports, so; I was in denial for years. I felt so alone until I was 19. I started using a cane to be more stabilized. At 22, I started using a rollator/walker, as much as I didn't want to be 22 in using a walker, it was a definite game-changer for me. It gave me so much freedom in my everyday life. It's allowed me to walk without having constant anxiety that I'm going to lose my balance and fall. Every day for me is different from the next. I watch my niece and nephew. I'm currently enrolling in a clinical trial for FA, & I'm also a FARA ambassador. I became an ambassador because I find spreading awareness for FA is so important!! I enjoy spending time with family friends and my boyfriend. I love to travel and listening to music.

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