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FARA
Cure FA
Meet the CommunityYou 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.
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.
Name: Neal Ramer
Age: 41
Where do you call home? Tippecanoe, IN
Education degree(s): 8th grade
Do you have children? No
What's a typical day for you? Typically, I sleep, eat, take care of my dogs, eat, sleep... rinse, repeat. I am a dog breeder.
How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed at 18 with Charcot-Marie Tooth (CMT) because there was no genetic test. Then when I was 23, I was correctly diagnosed with FA by a blood test.
Name: Emery Fitzhugh
Age: 20 years old
Where do you call home? Texas
Education degree(s): High school degree
Who do you live with? I'm single and I live with my parents
What's a typical day for you? A typical day for me is watching Netflix, eating, and cleaning. I love drawing, painting, and taking care of my 3 dogs, which are a black lab, a Chihuahua, and a mix. I also love watching musical movies and watching Youtube.
How long have you known you are living with FA? I knew something was wrong at 7 but was diagnosed at 8.
Name: Ryanne Batta
Age: 15
Where do you live? Watertown, SD
Education/Grade: I'm a sophomore in high school.
Who do you live with? I live with my parents, my brother Sam when he's home from college, our dogs Buddy and Solar; Solar is my service dog.
What is a typical day for you? During the school year, I go to some classes at the high school and also work from home for other classes. In the summer, I like to spend my days at home by the lake.
Name: Erin Wooten
Age: 26 years old
Where do you call home: Carthage, Mississippi
How long have you known you are living with FA? I started having early onset problems when I was about 12 years old but I didn't get a correct diagnosis until I was 19 years old. I started off thinking I was just a clumsy kid. About age twelve, I couldn't even walk a semi-straight line. I went from one side of the hallway at school to the other like a ping pong ball. I also could no longer walk up or down stairs without help. My legs just felt unexplainably funny. I started seeing doctors shortly after. With those symptoms, I was diagnosed with inner ear problems.
Name: 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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