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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:

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!

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.

Zach Gault

Zach GaultName: Zach Gault

Age: 22

Where do you call home? North Carolina

Education (degree(s): I have an Associates in Arts Degree

Who do you live with? I currently live with my older brother.

What's a typical day for you? A typical day for me would be waking up and eating breakfast then showering. I watch TV, eat lunch, play Xbox sometimes and then go to the gym at night depending on how I’m feeling that day.

How long have you known you are living with FA? I was diagnosed with FA when I was 14 years old. I was diagnosed through genetic testing.

Are there any others with FA in your family? No other people in my family have FA.

Deniz Nascimento de Santana

Deniz Nascimento de SantanaName: Deniz Nascimento de Santana

Age: 38

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, and I have finished high school.

Who do you live with? I am divorced and live with my 15 year old daughter

What is a typical day for you? This is my daily routine: twice a week I have physical therapy or pilates (I alternate every two months) + acupuncture, once a week I have a speech therapist, once a week I talk to my psychologist, on Sundays i go to church and the spare time i spend at my little store. It helps me pay the bills and keeps my mind busy doing what I like. At night, I watch a little bit of TV before going to bed. Well, I have to change a little bit what I said. This was my routine before the pandemic. Pilates, psychologist and church are now virtual. I went through the last 8 months without therapy and some of my business clients have become virtual.

Mary Bircher

Mary BircherName: Mary Bircher

Age: 31

Where do you call home? Durham, North Carolina

Education (degree(s): I have a BA in English from the University of North Carolina at Greensboro and an MA in Victorian literature from the University of London.

Who do you live with? I live with my boyfriend who I've been dating since high school! We also have a corgi named Finn.

What's a typical day for you? Well I am a pretty boring person! I sleep late and then I find whatever needs to be done around the house. I'll play some video games, and I really like to read. I do exercises and twice a week I have PT. My boyfriend's job allows him to be home most of the time so that's really helpful.

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.

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