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FARAFARA Cure FA

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.

She did not describe much about what FA was while I was there, so I went home, Googled, and cried. This was only a year and a half ago!! So I am new to the community and it is hard to take it all in some days. But I do not let FA stop me!! Regina is a talented local artist in St. Pete! Regina is a talented local artist in St. Pete!I still drive with my hand controls, go to the beach, wheel around downtown, and am a local artist here in St. Pete. I also volunteer for two organizations locally, one to help feed local children and families, and the other to speak out against human trafficking.

But most of all I have the most amazing support of friends, some family, and my FAmily that help me realize that I am still me, I just happen to have FA, FA does not have me.

ReginaRegina

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are 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.
 
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.

 

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