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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!


 

Arts & Creativity

So the topic of the day is how do I use the arts and creativity to help with Friedreich's Ataxia? Well I do so in many ways. Regina Painting

I have been drawing and painting from such a young age that I do not even remember. I did a lot of painting in my early twenties then for some reason put down my brushes. It was not until the summer of 2012 that I met a local artist that would inspire me more than I ever thought imaginable. His name was Bill Correira, otherwise known as BC Woo. Not only was he an amazing artist but just so happened do be a huge supporter of FARA! He had painted at the past two FARA Energy Ball events in Tampa. It was like it was meant for us to meet.

Where I live, in St. Petersburg, FL, we have a weekly art meet up outside where artists gather to create, share ideas, and inspire each other. We paint, draw, sculpt, anything, and just hang out together for a good time. I had gone as an onlooker for a few weeks until Woo got me talking and he found out I used to paint. Mind you, I had not held a paint brush in over 6 years, but he managed to convince me to pick one up again and told me I never stopped being an artist . I then spent a few days a week with him at his gallery just hanging out and painting again.

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Lake Denk

Hey everyone, my name is Lake. I am 38 years old. I live in San Antonio (for now, I like to move around). I do call Kansas City my home since I was there for most of my life. I was diagnosed with Friedreich's Ataxia 16 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.

LakeNothing. 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 come 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.

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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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