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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!


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.

Read more: Telling Friends and Family about FA

Robbi Van Schoick

My name is Robbi Van Schoick and I am 33. I live in Athens, Georgia with my parents. My younger sister, Katie, lives in Atlanta with her husband. I am a proud aunt of two nieces.  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 my middle sister 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!

Read more: Robbi Van Schoick

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!

Read more: World of Beer Fundraiser

John

I live by myself on the 14th floor in a studio apartment in downtown Silver Spring, a city next to Washington DC. I don't have a normal job. I'm not independently wealthy at the moment. I'm working on it. John

I could be called obsessive with my workouts. It comes from, in part, being obsessed with sports as a kid. The other part is knowing how important to my health exercise is. Monday-Wednesday-Friday I go to the gym and either swim laps or walk on the treadmill. I do stretches and yoga poses and miscellaneous exercises most days. So passionate am I that I became certified as a personal trainer, and I'm currently studying nutrition.

Read more: John

The Maryland Youth Leadership Forum

The Maryland Youth Leadership Forum (YLF) prepares a select group of 30 high school juniors and seniors with various disabilities for an independent, hard working adult life. This past week YLF held its annual three-night camp at Towson University, near Baltimore, full of leadership activities and guest speakers and teachers all with disabilities. The program is sponsored by Independence Now, the Center for Independent Living I used to work for. I was invited to be a group co-facilitator for the week. The following is my experience at the 2013 YLF camp.

I arrived at Tubman Hall in the West Common Village of the suburban university on Tuesday morning. The six co-facilitators and eight co-counselors had a staff meeting where we received our binders containing the packed itinerary for the week and our official, black, staff t-shirts. This dormitory was built two years ago and every room had amenities like a fully accessible bathroom, fridge and microwave.

At 11 I headed downstairs to welcome the YLF Delegates, as they were called, and led a herd of kids, many of whom were away from home for the first time, through the quad to the ballroom where they received their binders full of activity sheets we would be working on throughout the week, and their red, gray or blue shirts signifying their group. I had The gray group, an especially chatty bunch. 

Read more: The Maryland Youth Leadership Forum
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