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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is 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.

FARA Ambassador Program Mission Statement:

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.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

Flatbread Pizza: Race for Matt and Grace

Being someone with FA, I should be, but never am prepared for the support and caring I feel from everyone at a FARA fundraiser. The Flatbread’s Pizza kickoff to the Race for Matt and Grace in Providence, RI last week was no exception. 

My husband, Dave, and I get in the car to pick up our friends, Erin and her aunt Maureen. I don’t know how, but we are late half the time…I call it FA time (even though other folks I know with FA are always on time, I like to blame it on FA). So we are twenty minutes late (or not late for FA time). Of course Erin and Maureen were very gracious about our tardiness. Erin may have FA, but FA time is not one of her symptoms.

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Beth Bax

BethI am a wife, a mother, a good friend. And an engineer for 40 hours a week. And, oh yeah, I have a disability too. I was diagnosed (when I was a newlywed!) in 1999 at age 30. It took me years to get the correct diagnosis because my symptoms weren’t very severe. My neurologist was happy we had a diagnosis; me, not so much! 

I try not to let FA define me. I am in a wheelchair full time; and when people first meet me, they doubt my abilities. And there are many things that I can’t do or that take a crazy amount of time for me to try to do. But I also work full time, go to the gym, bike, do laundry, and make toast (& order delivery pizza) as well as everybody else. And even though I have a slur, my kids seem to fully understand me when I start hollering about dirty laundry on the floor.

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Spotlight on Barry Rice, Founder of Cycle Ataxia

'Luck' of the Irish

Barry Rice has had to adapt to Friedreich’s Ataxia in every aspect of his life in Dublin, Ireland: moving his family to a house next door to his parents; now working from home, adjusting his family business ShutterCo; and becoming more conscious of his health, being forced to find new ways to exercise. In his teen years, he began noticing subtle signs of weakening coordination. After seven years of seeking the cause of his symptoms, Barry was diagnosed with FA, slight scoliosis, and cervical dystonia in January 2013 at the age of 32.

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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.

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Megan

Hi Everyone! My name is Megan. I am 29 and I'm from a small town called North Baltimore, Ohio. I am the mother of one beautiful 4 year old little girl named Olyvia and I just recently got married! I am a student at The University of Cincinnati but I do it all online. I am majoring in Health Information Management.

I was diagnosed with FA at age 18. When I was about 15, I was running track, playing volleyball and very active and began being picked on by coaches, teammates and friends for the way that I walked and ran. My knees locked and I was very flat-footed and awkward. My brother told me to loosen up because I walked like a “soldier”.

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