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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!


Sam Bode

SamBode1Name: Sam Bode

Age: 31

Where do you call home? North Branford, CT

Education: I have a bachelor of science in communications with a specialization in video production.

What is your relationship status? I am a single transgender male. I live at home with my sister, Alex and mom. We have learned how to live together as three respectful adults. A lot of people seem to think there is something wrong with living at home with my family, but our house is always fun with people around at all times of the day.

What's a typical day for you? A typical day for me would be to get up early and get ready for work. I work in my old high school as an administrative assistant. I am responsible for directing people who visit the school, as well as some security (no I don’t carry a gun, which is not advised for someone with FA:). I also mentor some of the students and help out teachers. After work every day I have someone work out with me.

How long have you known you are living with FA? I was diagnosed when I was 8 years old, on April 13, 1995.

Are there any others with FA in your family? Yes, my younger sister Alex has FA. 

Chelsey Sommerfield

ChelseySommerfieldName: Chelsey Sommerfield

Age: 27

Where do you call home? Winnipeg, MB, Canada

Education (degree): Administrative Assistant

Who do you live with? I live with my parents and sister at the moment.
Had my own apartment which I loved but after rent and bills I was not saving for the future.

What's a typical day for you? Monday through Friday I usually start my day around 6:00 in the morning. I work full time 8:30-4:30 and then I usually go to the gym before or after work.

How long have you known you are living with FA? (When and how were you diagnosed?) Diagnosed at 17, almost 10 years ago. Through months of going to different specialists they ended up sending our DNA to Ottawa to get tested and that’s when the figured it out.

Are there any others with FA in your family? My little sister, Brittany Sommerfield, whose three and half years younger than me.

Describe your transition from walking to walker/wheelchair. Transferring from walker to wheelchair doesn’t happen overnight. At about age 21, I started using a walker. At first it was only sometimes, but then eventually it became all the time. But then I started falling and once I began falling in public. I started using a wheelchair when outside the home. At the age of 23, I had surgery on my stomach and that’s when I began using my wheelchair all the time. Now I have a power chair and a manual chair depending on how productive I need to be (If I’m at work or need to run errands I’ll take the power chair) where I am (Won’t use the power chair in someone’s apartment as I will most likely put holes in the walls haha) and how I’m travelling (If its someone’s personal car I’ll need the manual, city bus I’ll need the power and with handi transit its vice versa). 

Yesenia Ramos

YeseniaRamos1Name: Yesenia Ramos

Age: 20

Where do you call home? Edmond, Oklahoma

Education (degree(s): I feel limited on my physical abilities I haven’t considered it, besides I am not sure how I can get financial help for my school and I don’t want to depend on my parents.

What is your relationship status? Who do you live with? I’m single; I currently live with my parents and brother

What's a typical day for you? A typical day for me, stay home, play video games, watch movies, read and write, depending on my mood.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed when I was 11 years old, so it’s been about 9 years. My mom would notice that I walked imbalanced or like a drunk. She compared my symptoms to my brothers and took me to MDA (muscular dystrophy association) to get checked and tested. They called my mom and told her I came out positive for Friedreich’s Ataxia.

Are there any others with FA in your family? I have an older brother, Aaron Ramos, who is 26 years old.

Describe your transition from walking to walker/wheelchair. When I was in 5th grade I was diagnosed and I remember warning all my friends that in 6th grade (middle school) I was going to be in a wheelchair. When I finally entered middle, all my friends looked at me like what I had was contagious, like they were afraid of me now. I went from popular to an outcast.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do very little physical exercise, but I maintain my self strong mentally. The way I do it is talking to family and friends and giving them motivation. 

Adam Kiess

AdamKiess1Name: Adam Kiess

Age: 38

Where do you call home? Wichita, KS

Education (degree(s): Bachelors of Arts in Communications with an emphasis in Broadcast Journalism – Wichita State University

What is your relationship status? Who do you live with? Single. Parents and sister.

What's a typical day for you? Workout at YMCA, watch TV.

How long have you known you are living with FA? September 1997. Blood test.

Are there any others with FA in your family? Yes, my sister, Andrea.

Describe your transition from walking to walker/wheelchair. I tore meniscus twice in my knee, so decided wheelchair would be better and safer for me. 

Clifton Raspberry

CliftonRaspberry1Name: Clifton Raspberry

Age: 35

Where do you call home? Spring, TX

Education (degree(s)? High School. I was an equipment operator and truck driver.

What is your relationship status? Do you have children? No, I am not married, and have no children.

What's a typical day for you? My daily routine changes. Errands, chiropractor visits, maybe wrench on a truck, caregiver visits, seeing my girlfriend, and/or watching TV in the evenings are typical.

How long have you known you are living with FA? I was diagnosed in 2004. Started showing signs in 2001. 

Are there any others with FA in your family? No others. I am adopted.

Describe your transition from walking to walker/wheelchair and/or any other adaptation you have had to take due to living with FA. After nearly breaking my foot, I decided to use adaptive equipment, and use a walker. My additional adaptation has been learning to hold on to things when I walk. 

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