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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!


Megan Leeper

Megan LeeperName: Megan Leeper

Age: 21

Where do you call home? Burleson, Texas. The DFW area.

What is a current goal you have with your education? I am working on getting a bachelor's degree in psychology with a focus in forensics.

What is your relationship status? I currently live with me parents and two dogs.

What's a typical day for you? A typical day for me is pretty laid back, since my schooling is now online. Physical Therapy is twice a week, and because I struggle with fatigue, I am mostly a homebody.

How long have you known you are living with FA? I found out I had FA after a nerve biopsy. Every doctor struggled with figuring out what was wrong. My genetics were examined to confirm FA.

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Lindsay Ashman

Lindsay AName: Lindsay Ashman


Age: I am 39 years old!!


Where do you call home? I was born and raised in Savannah, Georgia.

Education: I earned an English degree from Armstrong State University on Round 2 of college when I was 34 years old. (Round 1 was right after high school and before the FA diagnosis - mobility was my only obstacle, but it was a huge deterrent.)

Who do you live with? I have a 17 year old son, no wedding ring and no apologies. My son and I have lived on our own for six and a half years.

What's a typical day for you? I feel like I live at the grocery store! Really though, I am a freelance writer who is always looking for an interesting story. I spend my days working on something that may or may not be bought. I must be an optimist after all. (wink)

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Seth Holm

Seth HName: Seth Holm

Age: 25

Where do you live? St. Paul, MN

Work/Education: Beginning school in Spring 2020 to work towards an Accounting degree

Who do you live with? I am currently single, I live with my parents and little sister.

How long have you known you are living with FA? I was diagnosed when I was 21 years old at Mayo Clinic in Rochester, MN, so about four years ago. I had symptoms for a half dozen years prior, but balance and coordination had significantly gone downhill by that point in time. It felt good to know why I'd struggled in sports, exercise and simply participating in activities my friends did.

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Neal Ramer

Neal RamerName: 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.

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Emery Fitzhugh

Emery FName: 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.

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