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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!


Kim Ayres

Kim AyresName: Kim Ayres

Age: 49

Where do you call home? Maple Grove, MN

Education degree(s): 2 Year Associates Degree

Who do you live with? I live with my husband Bob. Our 3 kids are now young adults. Gunnar is 24, Carson is 23 and Madison is 21.

How long have you known you are living with FA? I was diagnosed in 2011 but showed signs as early as 2004.

Are there any others with FA in your family? Yes, my younger brother Bill.

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Carrie Bolinger

Carrie BolingerName Carrie Bolinger

Age 38

Where do you call home? Eastern Colorado

Education degree: I have a Bachelor's degree in Accounting.

Who do you live with? I am single and live by myself.

What's a typical day for you? I usually go swimming in the mornings at 5:30 am, and then off to work for 8 hours. After work, I usually, go hang out with friends, relax on the couch, or work part-time jobs.

How long have you known you are living with FA? I was diagnosed in July 2017 after seeing my balance declining.

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Barbie

BarbieName: Barbie

Age: 21

Where do you call home? I live in upstate NY.

Education degree(s) I plan on starting school in the fall.

Who do you live with? I am single and live by myself.

How long have you known you are living with FA? I was diagnosed in 2014.

Are there any others with FA in your family? I have a younger brother with FA.

Describe your transition from walking to walker/wheelchair. Like most people, I resisted the use of any assistive device. I currently use a walker and wheelchair.

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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.

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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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