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FARAFARA Cure FA

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!


 

The Swaney's

Swaney KidsName Dawson Ryker Swaney

Age 15

Where do you call home? Pendleton SC, "where the blue ridge mountains yawn its greatness and the tigers play." I live in one town over from Clemson University, National Football Champions.

Education: 10th grade

Who do you live with? I live with my parents, sister and my 3 lizards (Taz, bearded dragon, Flash, a leopard gecko, and Speck, veiled Chameleon). I also have my service dog, Otis, my sister's service dog, Piper and our family miniature poodle, Bear.

What is a typical day for you? A typical day is high school followed by Crossfit.

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Damaris Eunice Seballes

Screen Shot 2019 07 19 at 2.33.59 PMName: Damaris Eunice Seballes

Age: 21

Where do you call home? Texas

Education degree(s): High School Diploma & some college

Who do you live with? I am currently in a relationship, which we are taking serious. I do not have children nor do I really want any. DON'T GET ME WRONG, I adore kids, but I don't exactly see being a mom in my future. As of now, I live with my mother and siblings. Although, hopefully in the near future I'll be able to decorate my own house.

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Susan Allen Carter

Susan Carter Profile PicName: Susan Allen Carter

Age: 45

Where do you call home? Northeast Louisiana

Education [degree(s)]: I currently have a Bachelor's degree in Social Work and Master's in Education. I also have a degree in Community Counseling. ALL people have struggles and ALL people have things for which to be thankful. In essence, that is my job as a counselor.

Who do you live with? I'm recently divorced. I live with my 15-year-old daughter and two cats.

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John Day

John DayName: John Day

Age: I am 50 years old.

Where do you call home? I call southeastern Indiana my home. I am about 30 minutes away from Cincinnati, Ohio.

Education degree(s): I had some mechanical engineering courses in college.

Who do you live with? I am currently single and set in my ways. I have no children, and I live by myself. I have lived on my own since I was 18 years old.

What's a typical day for you? My typical routine throughout the day varies, but I always make sure to exercise. Just managing things around the house and errands keep me busy.

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Marc Mailloux

Marc 4Name: Marc Mailloux

Age: 51

Where do you call home? Cohoes, NY

Education: 12th grade

Who do you live with? Do you have children? Single and I have one daughter.

What's a typical day for you? I've worked part-time at Wal-Mart for 18 years.

How long have you known you are living with FA? Diagnosed March 18th, 1985, just after turning 17.

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