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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!


Christopher Robin Brian Halstead

Christopher HalsteadName: Christopher Robin Brian Halstead

Age: 19

Where do you call home? Douglas, Manitoba

Who do you live with? My grandpa and grandma

How long have you known you are living with FA? I think I was 15 years old, maybe 16.

Describe your transition from walking to walker/wheelchair: I now use a walker and I have a wheelchair for long walks if I need. I also got two chair lifts added to my home, one for my room and one for my front door.

Andres De Vita

Andres De VitaName: Andres De Vita

Age: I’m 30 years old.

Where do you call home? I live in Buenos Aires, Argentina.

Who do you live with? I live with my mom, my dad, and my sister.

What's a typical day for you? Work at home making physical activities (ex. Kinesiology, Crossfit)

How long have you known you are living with FA? It all started when I was 7 years old. In a gym class, the professor ordered us to jog. That's when he realized that I was tripping too much. After long years of failed diagnoses and resorting to many doctors, at the age of 14, I was diagnosed.

Fredson Nascimento de Santana

Fredson Nascimento de SantanaName: Fredson Nascimento de Santana

Age: 43

Where do you call home? I was born and live in Antônio Gonçalves, a small town in the countryside of Bahia State, in the Northeast of Brazil.

Education: I have a degree as a teacher’s assistant.

Who do you live with? I am single and live with my parents.

What is a typical day for you? After I finish breakfast I open my little computer store. I work in my parents garage doing personal computer maintenance.

Chrysanthi Zouva

Chrysanthi ZouvaName: Chrysanthi Zouva

Age: 37

Where do you call home? Athens, Greece

Education (degree(s): My academic journey began with a 4-years bachelor’s degree in Geology and Geoenvironment from the National and Kapodistrian University of Athens. Due to my scientific curiosity, I continued my studies in an MSc and afterward at a Ph.D. level related to Environment and Development, linked to the Spatial Decision Support System at the National and Technical University of Athens. The range of my studies, combined with my expertise and passion will give me the opportunity to move a step forward in the research of FA in my country.

What's a typical day for you? Every morning I start my day with therapeutic swimming or gym or training with my handbike. Later I usually stay at home, cooking or working at my laptop.

How long have you known you are living with FA? I was diagnosed at the age of 20, certified by a DNA test, but my first symptoms began at the age of 17, after instability issues.

Are there any others with FA in your family? No, just me...

Sean Sommerville

Sean Hello my name is Sean Sommerville. I started experiencing symptoms of FA in high school while I was pursuing my dream of becoming a professional pilot. It wasn’t until after my freshman year in college that I decided I wanted to get my poor balance looked at by a professional. After a year of being poked and zapped more times than I can remember, I finally got diagnosed with FA.

The diagnosis was one of the hardest things to come to terms with in my life. While that diagnosis took me out of the cockpit, I still earned my commercial pilots license with single engine land, multi-engine land, and instrument ratings, as well as my certified flight instructors certificate all while experiencing symptoms of FA. I hope to one day return to the cockpit when a cure is reached, but in the meantime I will do all that I can to help my fellow FAers, raise awareness and money for this disease, and push my own limits biking, hiking, and facing the physical challenges that FA comes with to prove to myself that it won’t keep me down.

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