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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!


 

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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Springfield Outback Fundraiser

As my mom and I drove home from a recent fundraiser, I used my iPad to capture the day in words, and couldn't help but smile. I was filled with this overwhelming sense of pride and hope. The fundraiser luncheon at the Springfield, Virginia Outback on June 8th, 2013 was nothing short of amazing. The amount of support that FARA has from the community, as always, is unbelievable, and the drive and determination shown by FARA's staff is rarely ever matched.
This event was attended by all of FARA's six-person staff and board members. Apparently, there was a board meeting in the city of Springfield, so all the members were able to attend the fundraiser. This rarely, if ever, happens and I certainly have never been to a fundraiser where all of the FARA staff were present. They are routinely so busy being spread so thin attending other events, it is not unusual to see only one or two at each event. This a great problem to have, I think. It's a testimony to how many fundraisers there actually are. The more fundraisers, the bigger the chance of any treatment and a cure, and this gives me hope.

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Regina

 

My name is Regina Russo, I am 31 years old and live in St. Petersburg, Florida.

I have been living here about seven years now and grew up in Dayton, Ohio. I was not diagnosed with FA for 12 years from when I first started seeing Neurologists when I was 18. ReginaI have always been independent and moved out of my parents' house when I was 18 and worked two jobs. Therefore, my family never really went to any doctor appointments with me nor ask me many questions about them. Besides, at the time we mostly all lived in different states.

 

It all started with lack of balance and on to limping and so forth. Doctors had absolutely no idea what was wrong with me for nine years, this was after six neurologists! I was considered the "rebel" kid in my family...going to clubs, drinking at an early age, and part of the goth club scene. I LOVED dancing!! Lucky, being a club girl, most my friends sadly thought I was a drunk and I let them believe that. It was easier to say that I was drunk than to explain that I had no clue why my legs were deteriorating on me.

So I moved to Florida (where there is no snow and ice to fall on when I had a cane) and a Neurologist misdiagnosed me. It was another no cure, no treatment deal so I did not see another doctor for over three years. Then I went to the University of Cincinnati to meet a new neurologist and right away she guessed that I had Friedreich's Ataxia.

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Adventure Day

All 2013My experience of the FA community is that everyone is very welcoming. I guess this is so, in part, because FA is so rare, everyone is happy to invite another one in fifty thousand to the table.

So the bond is strong, but we do not know everyone. We need to be intentional in developing our community. I worked, for over ten years at a non-profit called Project Adventure (PA) whose aim is to provide experiential learning and adventure experiences to groups to help them grow (develop goals, promote community, etc.). It took me some time to realize that, like FA Woodstock and other awesome things people do that I don’t know about, I could do the leg work to provide a community building experience for FAmily. So, last year in April we had our first FA Adventure Day, we just had our second. Both days were awesome!!

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Andrea Kiess

 

Andrea & Ramada!At the age of 14, I thought my life was perfect. But the events of the next year turned that opinion upside down.

My name is Andrea and I live in Wichita, KS. As a freshman in high school, my gym teacher noticed that I was "extra" clumsy and uncoordinated while my class was doing a series of physical tests. She had the school nurse observe me during class and the nurse agreed. She called my mom and my mom took me to a neurologist.  Andrea & Ramada (aka the BEST service dog in the world)! After many tests, this neurologist told my mom that I had a virus and would be fine. A year later, my clumsiness and uncoordination kept getting worse, so my mom dragged me to another doctor.

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