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FARAFARA Cure FA

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

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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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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The Blackburn Challenge

We did it! Our friend Tim and I paddled twenty miles around the coast of Gloucester, MA in The Blackburn Challenge. The Blackburn is named after a nineteenth century fisherman who paddled his dory sixty miles to land when he became separated from his vessel. Dave, Jean and Tim. Dave, Jean and Tim. He even purposefully froze his hands to the oars so he could keep on paddling. Check out www.blackburnchallenge.com for more if you’d like. Tim thinks, and I agree, that Blackburn is just like those of us fighting FA…loving life, staying strong, and not quitting despite a tough prognosis. While we paddled, my husband Dave was our crew. We couldn’t have done anything without him. In many ways, and I am not belittling my accomplishment, I was enabled by Tim and Dave.

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