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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 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!

Priscilla Weatherford

Priscilla 5Name: Priscilla Weatherford

Age: 34

Where do you call home? Abaco, Bahamas

Education: High school degree and an Advanced Biblical studies certificate from Liberty University

What is your relationship status? Do you have children? No kids; live with parents.

How long have you known you are living with FA? When I was around seven years old, my thirteen-year-old sister was diagnosed with FA and that same doctor who diagnosed her suspected from my gait that I would develop FA as well. At around the age of eleven, I began losing my balance and noticing difficulties with coordination, etc. About a decade ago, my diagnosis was confirmed with DNA testing.

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The Walker Family

Kate 2Name: Kate Walker

Age: 15

Where do you call home? North Louisiana

Education: 10th grade

Who do you live with? I live with my parents, Rachel and Jason, and my dog, Ellie Mae.

What's a typical day for you? Since it is summer right now, my routine is different than it would be during the school year. I usually wake up around 9 or earlier and lay in bed for a while. I work on my website or my YouTube videos during the day. I try to find time to do some sort of exercises. Some days I spend time with friends, ride my trike, or watch TV. It depends on how tired I am that day. There are days I don't get out of bed much, but I try to keep myself motivated. 

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Gavin Oldaker

Gavin MTCName: Gavin Oldaker

Age: 29

Where do you call home? Western Washington

What is your education? What are your plans for the future? I finished a general Associate's a few years ago. I have a couple certificates in AutoCAD... When I'm cured, I'd love to major in Architecture, while minoring in Acting. Until then, I write here and there. Fiction. Nothing solid yet, but I'd love to put out something in my time waiting.

Who do you live with? I'm single, but I would love to find myself in a relationship. Right now, I live alone. My parents help me out with rent. It's pretty cool. Although it's a lot of work; nearly too much, and it's lonely sometimes.

What's a typical day for you? My typical daily routine involves reading, getting to the gym, watching TV/playing Xbox and cleaning. It seems I'm constantly cleaning. Those are the nuts and bolts of my routine anyway.

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Denise Lenhart

Denise 3Name: Denise Lenhart

Age: 43

Where do you call home? Ankeny, Iowa

Education: I did some college but no degree.

What is your relationship status? Do you have children? I have been married for 20 years and our daughter is almost 21(that makes me feel old!) We also have 3 fur babies, cats, who are good company for me but only when they feel like it!

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Carolin Benesch (Caro)

Carolin 4Name: Carolin Benesch (Caro)

Age: 27

Where do you call home? Münster, Germany

Career: After school, I started working for a travel agency, taking a licensing exam. I worked there until 2016. Since 2017, I'm not working to have enough time for all my therapies and sports because of this disease.

Who do you live with? I'm a single girl and live alone in my beautiful flat.

What's a typical day for you? My day normally starts at 9 am with a short but powerful breakfast at home. (Meals are very important!) Every day, I have therapy. I do physiotherapy once a week, speech therapy twice a week, I meet with a psychiatrist once a month, and I spend 1-2 hours with my personal trainer every week. In the evening, I often meet friends or my sisters, who live close to me.

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