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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!


 

Research funding is a precious resource

Last week FARA was notified of an opportunity to participate in a roundtable discussion about the US budget sequestration with Senator Bob Casey. Senator Casey has made it one of his top priorities to advocate for maximum National Institutes of Health (NIH) funding for medical research so that NIH funding does not suffer (as much) from the sequestration process.

Elected officials are approached on a daily basis with statistics and pretty graphs that illustrate trends supporting all kinds of issues. However we were told today that it is the stories from individuals that people remember and work wonders in Washington. To that end, Senator Casey and his staff held this roundtable discussion to collect stories of the individuals who will be affected by NIH budget cuts so he can use the stories when he is fighting for these issues in Washington.

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Stephanie Magness

It’s probably pretty obvious that my life has not completely turned out how I hoped and dreamed it would, but really, who can say their life has traveled this journey exactly how they thought it should?

Before 1994 there wasn’t any indication that my life wasn’t going to read like the most perfect fairy-tale ever. Why shouldn’t it have? I had a great childhood filled with a wonderful family and good friends. Of course hindsight is always 20/20, and there were small, subtle signs pointing to a different kind of life. But nothing to make me, or anyone else, think the fairy-tale ending might crash and burn with a scoliosis diagnosis during a P.E. screening in 7th grade. That’s how it all started, a routine exam in the gym locker room a few months before my thirteenth birthday suddenly morphed into a day I will never forget. Next stop was my pediatrician who pointed out what my parents had already begun to fear…there was something a lot more serious going on to cause my spine to twist into an “S” so quickly that no one had noticed it. The word “neurologic” must have been spoken in that room because a few trips to a couple different neurologists came next.

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Methodically Falling Prey

Dear readers,

My first poem was one I wrote in kindergarten about fireflies. As an adult, I am still writing, although my subject matter has evolved beyond insects! I am truly in love with words and with weaving them together to create beauty, appreciation, poignancy, and depth. I do not write for myself; I find peace and value in sharing my love of words with others. Most of my poetry is about my family, and I have actually never previously written about FA. The experience, in itself, was beautiful, in that the words poured from me. Even though FA makes typing difficult, I will not stop sharing. Please enjoy!

Robbi

 

Inspired by my fellow FARA Ambassadors Dedicated to Becca Van Schoick

 

Methodically Falling Prey

A new day breaks The endless fight begins again We have no choice in the matter Alas, we have never had a choice

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FA Woodstock and Ride Ataxia Chicago

By Mary Vida

I had the pleasure to attend my first Friedreich’s Ataxia (FA) Woodstock a couple of weeks ago (July 17-20, 2013) at the Flying H Ranch in La Porte, 994249_10201599759138663_2035621459_nIndiana, which is the Hook’s family property. The Hook FAmily is a pillar of the community.

Wonderful volunteers in the Hook’s community pitched in to help create an awesome environment that is geared towards having fun and just being yourself, despite the challenges of FA.

There were many activities to participate in: yoga, tie-dying t-shirts, fishing, mosaic tiling, swimming, socializing, card playing, music entertainment, firework display, launching of Chinese lanterns, Ice-Cream machine to make cones, and the meals were FAbulous.

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Richie Currier

My name is Richard Currier (Richie), I am 34 years old and I live in Winthrop, Massachusetts. Winthrop is a small, seaside town bordering Boston to the northeast. My father grew up there and my parents still live there. My mother is originally from Ireland.

I have a brother named Sean who is four years younger than I am. We have always been close. I'm quite proud of Sean, he's a Sailor in the United States Navy. Sean and I had the typical childhood and adolescence and we were always close growing up. My extended family also lives in Winthrop - my grandparents (on my Dad's side), aunts and uncles. I have many relatives in Ireland, too.

RichieI was always active in sports as a kid. I particularly loved baseball, basketball and soccer. Most of my closest friends also participated in athletics and we had a lot of fun playing in games together and all the other typical kid stuff growing up.

By the time I was in my mid teens I found that, unlike earlier in my life, I couldn't quite perform in sports at the same level as my friends. The changes came on gradually but steadily and by the time I was a senior I found myself spending more time supporting my friends who were playing than actively participating myself.

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