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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!


Corey Pemberton

CoreyPemberton1Name: Corey Pemberton

Age: 32

Where do you call home? Centerville, Ohio

Education (degree(s): Management Information Systems, B.A. Ohio University 2008

What is your relationship status? I am currently single. I live by myself in my own home in Las Vegas, Nevada.

What's a typical day for you? I work weekdays for the Bureau of Reclamation in Boulder City, Nevada. It is about a 30 minute commute ride from Las Vegas. I drive my own car there.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old. (January 2004) I first noticing my balance was off in the summer of 2003.

Are there any others with FA in your family? Yes, my brother, who is 5 years older than me. 

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Aimee Clifford

AimeeClifford1Name: Aimee Clifford

Age: 29

Where do you call home? New Brunswick, Canada

Education (degree(s): I am a licensed makeup artist.

What is your relationship status? I have a boyfriend, but we don't have any kids. I also live with my parents.

How long have you known you are living with FA? I was diagnosed with FA when I was 14.

Are there any others with FA in your family? My grandmother thought she had MS, but my doctors say she was misdiagnosed.

Describe your transition from walking to walker/wheelchair. I walked all through high school, and a few years after, I sometimes walked arm and arm with people. When I went to beauty school, I used a mail cart for independence. I walked with a cart for quite a while afterwards and when I went shopping I would use a shopping cart. I still don't want to be dependent on a wheelchair and my physiotherapist thinks I'm strong enough to walk with my cart. She wants to get me a walking device to use around the house. I still use stairs holding someone's arm. 

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Brittany Waters

BrittanyWaters1Name: Brittany Waters

Age: 30

Where do you call home? Maine

Education: Bachelor's degree in Public Relations

What is your relationship status? Do you have children? Married with 2 small children.

What's a typical day for you? I wake up really early with my toddler and then I keep both kids alive all day.

How long have you known you are living with FA? I started to realize there was a problem when I was a senior in high school. I wasn't diagnosed until I was 22 though, because I put off the test for a while so I could focus on my first couple years of college. I was a little afraid to know the truth too.

Are there any others with FA in your family? As far as I know, I'm the only one. Nobody else wants to be tested though.

Describe your transition from walking to walker/wheelchair. I still furniture walk at home, but I had to start using a wheelchair when I go places about two years ago. The hardest part for me has been getting over my pride. I imagine that people view me as a lesser human because of my obvious disability. I deal with it by being as present as I would be without the chair. I fight the urge to try to disappear. 

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Becky Taylor

BeckyTaylor1Name: Becky Taylor

Age: 42

Where do you call home? Vancouver, Washington

Education (degree(s): Masters in Teaching

What is your relationship status? Do you have children? Married for 11 years. No kids, unless you count my 24 4th graders and my yellow lab, Claire.

What's a typical day for you? I wake up every day at 5:30, leave the house eat 7:00, and get to work on 7:30. With teaching, no two days are ever alike! But, that is what I love most about my job. I leave work any time between 3:30 and 5:30, depending on if I have meetings or something else I need to do. My evenings are usually very laid-back. My husband and I usually connect with our friends once a week for dinner and a tv show. Maintaining strong friendships is so important to me. 

How long have you known you are living with FA? I was diagnosed with FA when I was 21. I first noticed symptoms when I was becoming dizzy while running down stairs.

Are there any others with FA in your family? I am the youngest of three girls. My middle sister also has FA.

Describe your transition from walking to walker/wheelchair. My progression, luckily, has been relatively slow. I continue to walk with my walker at home, but I use a scooter at work and when I travel. I walked unassisted for 9 years after my diagnosis. Around age 30 I started using a cane, but that didn’t last too long. I then got my first rollator, and began to use a scooter at work at age 38. 

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Kim Swiatek

KimSwiatek1Name: Kim Swiatek

Age: 51

Where do you call home? Tucker, GA

Education: I chose being a mother and housewife. Progression has stopped any other career goals.

What is your relationship status? Do you have children? Raised a wonderful son, I also have a beautiful daughter-in-law and granddaughter. I’m divorced and live with my boyfriend of 9 years.

What's a typical day for you? Basically get up, eat, get ready for the day with my caregiver. Play on computer, watch Netflix then sometimes get out and go shopping.

How long have you known you are living with FA? I was diagnosed at the age of 25. It was in March of 1992 before the gene was discovered. I went through 5 neurologists who didn’t have a clue about my balance and coordination. Finally found a doctor in Atlanta who knew right away what it was, as she had FA patients.

Are there any others with FA in your family? My sister had it. She passed away in 2016.

Describe your transition from walking to walker/wheelchair: I noticed clumsiness in High School and could not physically keep up with my peers. I would hold on to furniture and people as it progressed, then started using a walker after I was diagnosed. I used it for 5 years before I realized I needed a wheelchair. The hardest transition was having to give up driving, which I did at the same time. I realized I had to give it up after having a wreck with my son in the car.  Add a comment

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