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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!


Gracie Boudreaux

Screen Shot 2019 08 02 at 1.51.00 PMName: Gracie Boudreaux

Age: 17

Where do you call home? South Louisiana

Education degree(s): After I graduate high school next year, I want to study mathematics.

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

How long have you known you are living with FA? I was diagnosed with FA at 11 years old. When I was 9 my general doctor noticed a heart murmur and I was diagnosed with Hypertrophic Cardiomyopathy. After that we noticed that I was having trouble walking so I saw a neurologist, who found my FA.

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.

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.

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.

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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