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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


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.

Read more: The Swaney's

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.

Read more: Damaris Eunice Seballes

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.

Read more: Susan Allen Carter

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.

Read more: John Day

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.

Read more: Marc Mailloux
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