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FARAFARA Cure FA

Sean Baumstark

My name is Sean and I live in Sacramento, California. I love it here. Outside of four years of college and one year in Germany, Sacramento has been home for me since I was 17. I am 32 now. I can be silly, I play pranks on people I love, I can’t seem to do or talk about anything without making jokes, and I smile and laugh often.

I grew up with an interest in acting, the stage, and the piano. I wanted to be famous and I wanted to be talented. I was never much interested in sports – just wasn’t my thing. I’m the youngest of six kids and the siblings I remember living with growing up were all active and involved in sports. Our parents were supportive in anything we wanted to do and left it up to us to choose what we wanted to try and what we wanted to avoid (mostly – avoiding chores was never an option). They found ways to successfully juggle their careers, church life, chores, school, kids, and all the things we wanted to be involved in.

I grew up wanting to do (and be) a million different things. Often still, I find myself wanting to do/be a hundred different things and sometimes it can be so hard to decide what I want to work the hardest on. I don’t necessarily feel flighty or undecided, I feel like I can do/be whatever I want, I’ve never doubted that or believed otherwise. Whether I knew it in younger years or realized it more recently, I’ve always had an attitude that aligns with the mantra that life is what we make of it. Or the idea that you can do/be whatever you put your mind to. Nothing has ever caused me to believe or think otherwise. And trust me, as much as I love life and enjoy every day of it; I’ve probably faced enough challenges to make it perfectly acceptable for me to pack up my toys and go home. But for whatever reason, that’s not in me. At all.
I was diagnosed with FA in 2007 (age 25). The doctor advised me to avoid activities that require a strong ability to balance, such as cycling, hiking, running, etc. He also told me to start thinking about adaptions in my home like grab rails, and he advised me to buy or rent a place without stairs. I bought a bike one month later and committed to Ride Ataxia II, a 650-mile trek from Sacramento, CA to Las Vegas, NV with my then-new friend Kyle. My second time out on my bike I crashed and broke my collar bone. I healed and kept riding. I also started hiking a month after my diagnosis and I chose to always take the stairs.
I’ve since ran a half-marathon, I’ve hiked a few big peaks in my region, I had the privilege of being one of Team FARA’s four cyclists in RAAM, and I started running with a team of 12 in an annual 178-mile relay race two years ago and we are training for our third one now. Last month I was out on the bike trail and I lost my balance during my dismount and fell, fracturing my wrist in 2 places. However, I’m still going to the gym and I’m sitting on a stationary for boring-lengths of time to keep my body used to the saddle. I will heal and I will keep riding. I often fall at work or lose my balance and trip like an overly-excited 3-year old that’s wearing a blindfold and trying to run away from 12 puppies. However, I still believe I can do whatever I want to do and I can be whoever I want to be. I choose to get out of bed every day and do what I can, while I can, simply because I can.
Sean

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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