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FARAFARA Cure FA

Mary Vida

Born and raised in New Jersey, I relocated to Florida shortly after I was diagnosed with Friedreich’s Ataxia (FA). Being diagnosed over twenty years ago, it was imperative that I chose to deal with things as they come, so future expectations would not hinder me from living a meaningful life. Every person’s future is unknown to them, regardless of FA, so one day at a time is a very important life philosophy to embrace.

Life, as I knew it, began to change a few years after graduating from high school. I began questioning things going on within my body. I could no longer go down the stairs unless I was holding onto a railing, nor could I walk and converse with my friends at the same time. I was intensely focused on my walking, and it became obvious to me that other people did not have to actually focus on such tasks.

After numerous appointments & tests with different specialists, those two life changing words were added to my vocabulary: Friedreich’s Ataxia or FA for short. I was diagnosed with this inherited neuromuscular disorder at the age of 21. Being told there was no cure or any type of treatment for this condition, and that it is progressive, my emotions were all over the place, as you could imagine. I remember being tormented with images of wheelchairs, as that was not the future I had seen for myself. But, at the same time, elated that there was a real reason for what I was experiencing and I was not going crazy. I just could not believe that I had to watch my body slowly stop working without being able to do anything to prevent that from happening.

 

Needing to clear my head, I moved in with my Aunt in Florida, who was a great source of support for me. I earned a Bachelor’s degree in Psychology at the University of Central Florida and within a few months after graduating, I was employed by a mental health center in my community. While working, I was able to purchase a piece of property and have a wheelchair accessible home built. Due to the progression of FA, I left my place of employment in 2003, but kept on raising ataxia awareness.Mary

I live my life, as if I don’t have FA. It is all about assessing each situation and finding alternative ways to do things, as changes occur. Staying clear away from tomorrow’s expectations, and dealing with things as they come, will continue to allow me to make the best of this gift given to me… LIFE! Ironic, but my last name VIDA means life in Spanish and I sure do hope I get to see a cure in my lifetime. But, until that day comes, I will keep enjoying my life, as I hope you will do the same, FA or not!

Mary

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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