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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 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!


Drake and Trisha

Name: Drake (aka bub)

Age: 8 years old

Where do you call home? Ohio

Do you have any brothers or sisters? I have a sister named Zoe.

What grade are you in? I am in the second grade.

What do you like to do in your free time? Play outside, play DS and play Xbox.

How long have you been living (or known you are living) w/fa? (When and how were you diagnosed?) I was six when I found out. They gave me a blood test that hurt.

Brittany Wiseman

Name: Brittany Wiseman

Age: 25

Where do you call home? St. Louis, Missouri

Occupation/Employment: I work for Farmers Insurance. My manager's mother has MS, so she is familiar with the hardships disabilities can cause. She is incredibly understanding of FA and for that, I am beyond thankful.

Education: I originally went to school to become a vet tech. As my FA progressed, I realized the physical demands of this career were challenging. I changed my major to social sciences. Ultimately, I landed in the insurance field, became licensed, and chose this as my career.

How long have you been living (or known you are living) with Friedreich's Ataxia? I've been living with FA for 10 years. I was diagnosed at the age of 15 when I was doing routine testing prior to having scoliosis surgery. I was being tested for Neurofibromatosis (a disease my brother has) I had a horrifying experience. I was told "good news is you don't have Neurofibromatosis, bad news is you have Friedreich's Ataxia."

John Ryan

Name: John Ryan

Age: 26

Where do you call home? Coastal New Jersey

Relationship status? Single

Occupation/Employment: Unemployed at present/worked at MDA in the past

Education: Bachelor degree in Criminal Justice

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed 16 years ago at age 10. I saw a neurologist at the Children's Hospital of Philadelphia.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No.

Emily and Andrea

Name: Emily Therens

Age: 14

Where do you call home? Spokane, Washington

Are you married? Kids? Single parent? Haha, enjoying being a teen!

Occupation/Employment: Freshman at Shadle Park High School.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was just recently diagnosed but I have been living with symptoms (poor balance, falling, fatigue, fainting, problems with my hands) for several years. My Mom asked my doctor about this at every single visit but no one took her seriously.

Ashley Dodson

Name: Ashley Dodson

Age: 30

Where do you call home? Alabama

Occupation/Employment: I'm a wife and I clean my house, that is my job. :)

How long have you been living (or known you are living) with Friedreich's Ataxia? I was around 8 when I was diagnosed. My teacher noticed my writing was shaky and I couldn't keep up during a spelling test, and when my sister would cut my bangs and I'd shut my eyes, I would loose my balance.

Do you have any known family history of similar symptoms to FA? No (not that I know of).

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