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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!


 

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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FARA Ambassadors

The FARA Ambassadors are a group of people 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 etc.

Add a comment
Read more: FARA Ambassadors
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