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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!


 

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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Tom Trovinger

Hi, my name is Tom, I'm 38 years old, and I was diagnosed with FA in 1997. I live independently in my own house, which is very important to me. I strive to do whatever I can to maintain some level of independence for as long as possible. Living alone at times can be very difficult.Tom I find myself getting frustrated more easily because I routinely find different things that I either cannot do, or have more and more difficulty doing. It's almost as if I am continuously mourning the loss of different abilities. My constant struggle to maintain my independence can also be very difficult to friends and family members. I am very resistant to ask for, or accept, help. A lot of people around me get upset with me because they want to help, rather than watching me struggle with an otherwise easy task.

Staying active, to me, is a very important part of being able to stay independent. Staying active, doesn't necessarily have to involve exercise, but I think that is a huge part of it. I subscribe to the "If you don't use it you will lose it" rule, meaning if you have muscles that you don't use on a regular basis, they will gradually deteriorate, and eventually you won't have them to use. I work out at the gym four days a week, doing whatever I can. I also participate in physical therapy twice a week where I exercise my core muscles and walk, albeit for short distances. I also travel a lot, and participate in many social activities.

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Telling Friends and Family about FA

So how do you tell friends, family, and strangers about Friedreich's Ataxia? I think the answer is different for everyone, but I will tell you how I deal with this.Regina and friends!

I will start with family. As I mentioned in my bio, I moved to Florida 7 years ago without family. We are all pretty spread across the US. My immediate family will ask how I am doing but we never go into much detail. They all have looked at the websites that give the facts about FA, but we do not discuss the "bad" stuff that may happen. So we briefly talk about how I am doing on our phone calls and move on to other subjects. I feel it keeps the family more positive because it is not discussed in depth, even though we all know the facts.

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Robbi Van Schoick

My name is Robbi Van Schoick and I am 33. I live in Athens, Georgia with my parents and my middle sister, Becca. My youngest sister, Katie, lives in Atlanta with her husband. I have had FA for most of my life--since age 6. Growing up, I chose to shelter myself from learning about my disease, and in fact, I had never met anyone else with FA until Becca was diagnosed at age 12.Robbi

I am a native Texan, and my family moved a fair amount, due to my dad's job in pharmaceuticals for animal health. I really like living in Athens, home of the University of Georgia.

I received both my bachelors in psychology and masters in public health at UGA, and I am still involved there. Specifically, I volunteer as a co-teacher of a seminar on communication with people with disabilities, which is right up my alley. I teach with a professor in kinesiology, a subject I do not pretend to know a thing about. I really enjoy our class, and since we do some of the grading online, it is easy for me to engage. I teach only in the fall and *never* before noon!

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World of Beer Fundraiser

Held at World of Beer in Arlington, VA on Sunday, July 14, 2013 was the kick off party to what will be a continuous benefit for FARA.**

I rode with Tom and Cindy Trovinger to World of Beer, where we met Ron and Raychel Barteck, John Cernosek and his sister, Laura, and lots of other FAmily and friends. New to our FAmily is Megan. This was her very first time meeting anyone with FA and we can all remember how scary that is, especially because everyone else was more progressed than she was! Kudos to her for taking the plunge! She was very nice and friendly! Smart too! And she definitely has the good looking genes that come with FA. ;-) Total package and a great new addition to our FAmily!

World of Beer has way too many beers to choose from, the menu was a book! I would have taken quite a while to decide which to try, but they had very conveniently chosen PALM beer as the beer to drink. In addition to the kickoff party, 10% of Palm beer sales will go to FARA! I liked the beer very much. Not strong, but not too lite either! A good medium! There was also some really great live music and a silent auction. I was the only one to bid on the women's PALM tank so I am happy to say that I won!

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