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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!


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).

Jason and Alex Dagley

Name: Jason Dagley

Age: 29

Where do you call home? Frisco, Texas

Education: Some college

How long have you been living (or known you are living) with Friedreich's Ataxia? I have known I have FA since I was 10. My symptoms started around the age of 4-5. I was having difficulty in gym class doing aerobics. My coordination was off. The teacher suggested that I see my doctor. The doctor did some assessments in her office. She suggested that I have further tests done at Scottish Rite Hospital. After a thorough neurological test they really didn't know. In my medical record, it states that it couldn't be FA because my parents are only related by marriage. In the middle of all this we moved to Baton Rouge, Louisiana. We were hooked up with a neurologist at children's hospital in New Orleans. She conducted more tests, nerve and muscle biopsy, EMG, nerve conductions, an MRI and a spinal tap. They even tested my parents with some these. Nothing was conclusive.

Sam Brown

Name: Sam Brown

Age: 14

Where do you call home? Allen, Oklahoma

Education: 8th grade

How long have you been living (or known you are living) with Friedreich's Ataxia? I was eight years old and in second grade when I was diagnosed.

Describe your transition from walking to walker/wheelchair. My chair has made it so much easier getting around - kinda made me lazy. Although, I do wish I could keep my legs straight with a walker. I started using a chair full-time before I was 10. I really don't remember much about that time.

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