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FARAFARA Cure FA

John

I live by myself on the 14th floor in a studio apartment in downtown Silver Spring, a city next to Washington DC. I don't have a normal job. I'm not independently wealthy at the moment. I'm working on it. John

I could be called obsessive with my workouts. It comes from, in part, being obsessed with sports as a kid. The other part is knowing how important to my health exercise is. Monday-Wednesday-Friday I go to the gym and either swim laps or walk on the treadmill. I do stretches and yoga poses and miscellaneous exercises most days. So passionate am I that I became certified as a personal trainer, and I'm currently studying nutrition.

 

My main ride is this awesome scooter. It's fast and everywhere I go people ask where I got it because they want one for themselves. I try to go out everyday unless it's raining, if only to get fresh air and watch all the people going in their busy directions.

I'm a Baltimore Orioles lifer. Baseball is therapy for me. I see my squad develop and I relate toCamden Yards photo courtesy of Google. Camden Yards
photo courtesy of Google.
the grind of the long season. I hear Buck Showalter when he says not to let your highs get you too high, or your lows too low. There's another one tomorrow. Camden Yards smells like peanuts and crackerjacks and a good time even during a loss. And the beer is always cold.

Reading and writing are big hobbies. I'm always a student. I read books and watch people and listen to the streets, and the Beatles. I have a Tumblr page that I share with nobody.

And of course I have Friedreich's ataxia. I work with it to keep my life interesting. I've made many friends thanks to the bond created by FA. FA has qualified me for jobs and volunteer positions.Silver Spring, MD photo courtesy of Google. Silver Spring, MD
photo courtesy of Google.
The parties and the social web of ataxia are legendary. FA has taken me to distant cities and faraway lands.

Still, it can be lonely and frustrating and depressing, and sometimes I'd just like to scream. Sometimes I do scream, and the neighbors knock on the door to make sure everything's okay. I try not to let that happen too often. No matter how I explain it, no matter how understanding and compassionate people can be, sometimes it feels like I'm in a bubble; like no one can connect. So I do what I can to pop the bubble.

John

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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