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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!


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!

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.

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. 

Erin O'Neil

 

FA is rare. One has a better chance of getting a hole in one
on a Par 3 then being diagnosed with FA.

You have the same odds of dying of a heart attack while running a marathon then being diagnosed with FA. Yet with FA being rare and affecting 1 in 50,000 I was diagnosed with FA in 1992.

 

When I was told I had Friedreich's Ataxia, I didn’t know what that was or even how to spell it and honestly I didn’t care much, I was 12. I never thought I would end up in a wheelchair. Things like that don’t happen to me. I thought the odds were in my favor.Erin I played softball, soccer and basketball up until freshman year of high school when I became so off balance and uncoordinated. Although I had to stop playing and began to manage the teams, I never gave up. I was in the drama club, class chauffeur, prom court, skipped classes, got detention and was a typical high school kid. I also walked funny but life goes on.

During my 3rd year of college things were becoming unsafe, I had to start using a wheelchair. I was falling and spraining my ankle a lot, I was feeling embarrassed at the stares from outsiders and not wanting to carry books home to study or carry my tray in the cafeteria. At this point things became clear, I could choose to sit around, waste away and feel sorry for myself, or I could just carry on. I always chose to carry on.

Collaboration for a Cure!

Last summer, I was asked to show my support, along with other MDA families, at the finish line of the 2012 MDA Trans-NH Firefighter's bike ride. When it was announced at the end of the ride that the 2013 ride would be dedicated to me, two things raced through my mind. The first thing I thought of is how cool it would be to thank the MDA for their continued efforts in working with FARA to find a cure, and the second was that firefighters are usually good looking!

As the ride grew near, I was asked to give a speech at their banquet on the first night of the ride. I was excited; until I found out I was expected to speak for 15 minutes! I had no idea where to even begin. I have only spoken or been seen as a representative at FARA fundraisers and events, so I was out of my comfort zone.

When the day of my speech approached, I had a short list of notes to help me during the banquet; I was very nervous and felt unprepared. I was afraid to spend too much time talking about FARA because that is what I'm used to :) When I was introduced and handed the microphone, I looked out at all of the sweaty and tired riders and suddenly I wasn't so nervous and the words started to flow.

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