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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!


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.

Eric

In high school, I was a pretty normal teenager. I worked hard to get my driver's license at 16, and Ericrestored a Mustang GT with my dad. I traveled, and have been to many states, both coasts, and several different countries.

During college, I really focused on maintaining a 4.0 GPA. After my freshman year, my balance deteriorated to the point I could no longer walk. I decided to try stem cell therapy, and gained significant muscle mass, with improved tone and control.

Flatbread & Fisherman's Fundraiser

FARA is moving in the right direction.

 

I feel each day we hear of yet another breakthrough. We are coming closer and closer to the cure. As I wait, I do all I can to help FARA keep going by fundraising and raising awareness.

On Tuesday night, I had a "Flatbread & Fishermans fundraiser for FARA". Flatbread restaurant, which serves organic brickoven pizza, has a weekly charity night. A portion from the sale of pizza goes to FARA. A friend of mine donated a keg of "Fisherman's brew" which the entire proceeds from that sale also go to FARA. My uncles played some great tunes and my aunt belted out a few songs. I was rolling around from table to table checking out everyone’s pizza!

Throughout the night I saw a lot of family and friends, a lot of coworkers and neighbors, and a lot of other families affected by FA. As always it was a great time.

Jean Walsh

 

What Next?
Hi, I am Jean. I am 50 and was diagnosed with FA about 30 years ago.

 

This is something I have been thinking of a lot lately. They are going to find a cure for FA. Of course, it can never be soon enough, but it will come. When they do I am going to be as ready as I can be emotionally, physically and spiritually. I eagerly anticipate a cure and try to do what I Jeancan to make it happen. I think it is going to be harder than I guess/anticipate.
For 30 years I have known I had a chronic disease. For twentyish years I have identified with and identified myself as a person with a physical disability. Chronic disease, disability, Jean Walsh [yes talking about myself in the third person ;)] are so inextricably intertwined right now. I am not my disease, but it is complicated. My sense of identity is, right now, married to chronic disease and disability. While disease and disability do not run my life, they are facts of my life. And to me, disease and disability have given me opportunities to be strong, pursue happiness and be giving that I might not have had otherwise. I feel like I am a better version of me because I have FA. Maybe I would be the resilient person I think I am now if I didn’t have FA ... something I’ll never know and is not, to me, worth much thought.

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