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FARAFARA Cure FA

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. 

Describe your transition from walking to walker/wheelchair. When I was in eighth grade I had a lot of trouble walking. My mom decided to bring me a bright yellow walker into my school for my birthday. She decorated it with balloons and got some of my friends to bring it to me. It was a great way to introduce my walker because all my friends were involved.

What do you like to do to stay active and what type of exercises work for you to stay strong? I love to exercise! I try to exercise every day. We have a gym in our home where I have a hand trike, a weight machine, a standing frame and free weights. I used to ride my hand trike on the road until my eye sight became a problem. Now I keep it on a bike stand and ride it indoors.

Do you have any hobbies or special interests? I LOVE Football. I watch it all the time. My hero is Peyton Manning, I’ve followed him for years.

SamBode2What is a good trick to make daily life easier? I’m not sure that there is any trick that would make life easier. I think you just have to stay strong and keep good people around you.

When FA gets you down, what do you think/do to feel better? I don’t have to worry about feeling better, I never let FA get me down.

What is one way living with FA has POSITIVELY affected your life? I have met people through FA that have definitely made a positive change in life for me. Some have become really good friends. A few years ago my family came in touch with a guy from Rhode Island. We met a few times because he wanted to learn about FA. His daughter’s friend has FA and he was interested in learning all he could. Well, we became friends with Matt Fitzgerald and he is one of my best friends. He encourages me every day with a positive outlook. He also spends much of his time running marathons to raise money for FARA. I would never have met Matt if I didn’t have FA.

What is a favorite motivational quote of yours? My favorite quote is from one of my favorite movies, The God Father. “Leave the gun and take the cannoli”.

What is piece of advice that someone with FA has given you that encourages and inspires you? I think most people I have met with FA encourage me.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? You have to be hopeful for a cure someday but you also have to learn to accept your life and have fun.

"I have FA but FA doesn't have me." What does this statement mean to you? That statement to me means I will never let FA get the best of me.

How do you live your life in the face of adversity? I try to have a sense of humor but I know over the years I have developed a thick skin.

Tell us a little more about you.....I was a tom boy very early on in life. I played every sport there was. When I was diagnosed I continued to play sports until I just couldn’t play any longer. I was manager for a few teams in high school. A few years ago I finally realized that I was a transgender individual and started the transition to a man. I am really happy with my new life.

AlexBode mtc sig 17


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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