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Elizabeth Bowen

Elizabeth BowenMy name is Elizabeth Bowen. I was born and raised on Hilton Head Island, South Carolina. I was first diagnosed in 1998 when I was 14. I am the oldest of four and no one else in my family has had FA.

When I was 12, I wanted to be on the basketball team at school, so I went to get a sports physical and the doctor told me that I had scoliosis. My parents then took me to a doctor to address the scoliosis and due to reports of my lifelong lack of coordination and balance, what they thought was simply clumsiness, and movements the doctor noticed that I made, lead the doctors to think that there might be something else wrong and ended up testing my DNA and finding out that I had Friedreich's Ataxia. I played soccer at the time and for a while after. I also did join the basketball team when I was 12, but I turned out to be terrible at being on the court, lol.

Jennifer Garner

JenniferName: Jennifer Gasner

Age: 47

Where do you call home? ​San Diego, California

Education degree(s): BA in English, MS in Recreation

Who do you live with? I live with my boyfriend.

How long have you known you are living with FA? ​I was diagnosed at 17 in 1990 after a year by two doctors. It was before the blood test existed, but when the test was available, ten years later, it was confirmed.

Are there any others with FA in your family? No

Lily Kate King

Screen Shot 2020 04 23 at 10.17.23 AMName: Lilly Kate King

Age: 16

Where do you call home? My home is Winnsboro, Louisiana, which is in the northeast part of the state.

Education: I am a sophomore at Franklin Parish High School, where I am an honor student.

Sophia Sieber-Davis

SophiaMy name is Sophia. I'm a 29-year-old artist living in Northern California with my partner and our two young sons.

I was diagnosed with Friedreich's Ataxia at 13, though I noticed I couldn't keep up with the physical activities of my peers early in life. At 14, having just entered high school and the most awkward time of life, I struggled to maintain focus and calm in navigating through crowded hallways. I remember how much mental power it took to keep my gait steady. This was the point when I convinced my best friend to get her nose pierced with me; I wanted something I could concentrate on while I walked. No, it didn't make me cross-eyed- just being able to see its faint sparkle in front of my face gave me confidence and a sense of safety. It still does.

April FA Hangout 2020

April HangoutThe FARA Ambassador Program presents an FA Hangout asking: What have you been doing lately? Morgan T and Allison B are leading the discussion. Take a break from social isolation and catch up with us online! April 28th and 29th!

At FA Hangouts, we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every Hangout is open to anyone 18+ with FA and a translator if needed for hearing or speech difficulties. (mark your calendars, FA Hangouts will be the last consecutive Tuesday and Wednesday of the month, except on holidays and the like) at 8-9:30 PM EST

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