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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!


 

Mary Vida

Born and raised in New Jersey, I relocated to Florida shortly after I was diagnosed with Friedreich’s Ataxia (FA). Being diagnosed over twenty years ago, it was imperative that I chose to deal with things as they come, so future expectations would not hinder me from living a meaningful life. Every person’s future is unknown to them, regardless of FA, so one day at a time is a very important life philosophy to embrace.

Life, as I knew it, began to change a few years after graduating from high school. I began questioning things going on within my body. I could no longer go down the stairs unless I was holding onto a railing, nor could I walk and converse with my friends at the same time. I was intensely focused on my walking, and it became obvious to me that other people did not have to actually focus on such tasks.

After numerous appointments & tests with different specialists, those two life changing words were added to my vocabulary: Friedreich’s Ataxia or FA for short. I was diagnosed with this inherited neuromuscular disorder at the age of 21. Being told there was no cure or any type of treatment for this condition, and that it is progressive, my emotions were all over the place, as you could imagine. I remember being tormented with images of wheelchairs, as that was not the future I had seen for myself. But, at the same time, elated that there was a real reason for what I was experiencing and I was not going crazy. I just could not believe that I had to watch my body slowly stop working without being able to do anything to prevent that from happening.

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A Milestone Ride

In the beginning of 2013, a few of my 3-wheeled ataxian cycling buddies and I decided that we needed to do a milestone ride in our recumbent trikes. I had heard of a bike ride called the Hotter than Hell Hundred from numerous people who had done it in the past. With over 14,000 riders participating every year, it makes the Hotter N’ Hell Hundred the largest sanctioned ride in the US. Participants come from virtually every state and many foreign countries for this grueling day in the sun to ride either the 100 mile, 100k, 50 mile or 25 mile route. It is held in Wichita Falls, TX, 9 days before Labor Day every year. Over 15,000 gallons of hydration fluids and ice, truckloads of fruits, pickles and cookies, and thousands of volunteers make this ride happen for the cyclists. I proposed the thought to my friends of doing the 50 mile route and we all agreed it was the perfect ride to do!

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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 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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