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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!


 

Lake Denk

Hey everyone, my name is Lake. I am 32 years old. I live in Kansas City, Missouri. I’ve been in the Midwest most of my life. I was diagnosed with Friedreich's Ataxia 11 years ago. It all started when I was in college and I wanted to ride my bike on some of the dirt trails. It’s hard to describe the feeling to others without FA (but you know what I’m talking about) of knowing in your mind how to do something, but your body is saying no. Shortly after that I went to a neurologist who ran a gamut of tests; MRI, CAT scan, blood work, EMG (my personal favorite) and a spinal tap.Lake

Nothing. Nada. As far as he could tell by the results I was healthy, but from what he was seeing and hearing from me, he wanted a second opinion. He sent me to another neurologist, from one look at how I walked and what I described, he had me do a new DNA test that had just came out. I was tested for Charcot-Marie-Tooth disease (CMT) and Friedreich’s Ataxia (FA). The result came back that I unfortunately had FA. My first question was “How do I get rid of it?” The answer from the neurologist, currently there is no treatment or cure, was clearly something I didn’t understand.

Let's just say it wasn't good for the liver being a 22 year old college student that was told she had a life-shortening neuromuscular disorder. I took the news hard, the more I read about the details of FA, the more I wanted to just give up. For many years, I just went through life, day after day (kind of boring). But with the help of my friends and family, I started to see the beauty in everything, I started to care.

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Opportunities for Understanding

Here is the story of how I told family, friends and complete strangers that I have Friedreich’s Ataxia…Lake

When I was diagnosed 11 years ago, my mother & father’s reaction was chaos. They researched as much about FA as they could and grasped for anything that could possibly help me live a “normal life.” But days turned into months, which turned into years and here I still am with FA which is progressively getting worse. So since there is no immediate concern it was replaced with “How are you doing?” once or twice a year. I have a large family so any questions about me were immediately directed towards my dad, so I never had the opportunity to inform them myself. I honestly believe that a few of my family members don’t even know what FA stands for or what it involves.

Telling my friends was difficult and to some quite easy. Difficult because some friends I told became distant to the point that we don’t converse anymore. I guess it was hard to deal with the facts and details of FA. But my “true” friends have stuck by me no matter what, and treat me like a person and not a disease. They ask questions and want to know details. They are my family. Social networking sites such as Facebook have really allowed me to inform everyone, to educate and have an understanding.

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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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