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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!


 

Lonestar Benefit Bash Golf Tournement

Hero- a person who is admired or idealized for courage, outstanding achievements, or noble qualities

My family and I, as well as other families affected by Friedreich’s Ataxia (FA), truly believe our supporters who dedicate their time and hearts to help find a cure for FA are our heroes.

The 6th Annual Lonestar Benefit Bash Golf Tournament took place on Friday, June 6, 2014 at the Bridlewood golf course in Flowermound, TX. Usually, this event piggy backs Ride Ataxia Dallas in March, but due to poor weather conditions last year, it was decided to push the golf tournament to a later date in 2014. The FARA staff had a board meeting that day, so the local FA families played a bigger role in contributing to the success of the event.

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Christin Haun

Name: Christin Haun

Age: 43

Where do you call home? Broken Arrow, Oklahoma

Relationship status? Do you have children? Divorced, no children.

Occupation/Employment: I do not work anymore.

Education: AA in Psychology and BS in Special Education. Alma Mater: Northeastern State University in Tahlequah, OKlahoma.

How long have you been living (or known you are living) with Friedreich's Ataxia? 29 years diagnosed with FA. I was diagnosed initially by my orthopedist that recognized the correlation between scoliosis and unusual gait patterns. His hunch was confirmed by a neurologist.

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Read more: Christin Haun

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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