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FARAFARA Cure FA

Sean Mazeres

Hi, my name is Sean Mazeres. I am 23 years old and I was diagnosed with Freidriech’s Ataxia in 2009. I was 16 years old when I found out the devastating results. To hear, at that age, that this disease was pretty much a death sentence, was extremely hard to process and get through. With the support of my family and some of my friends I was able to get by. The low times were very low but the high times have been amazing and such a blessing. I definitely have had my fair share of bad days, also though, my good days.
 
I am an Executive Assistant. I work mainly behind the office desk, entering grades into the computer, creating flyers or documents for the classroom, working on the school’s website, and occasionally when needed help the students out in the classroom. The best way to sum up the school is like a one room school house. At this time we have about 15 students, varying from K-12. . Last year I wrote a play called” Tripping” a story of my life. Several of the students at the school I work at were the actors and the play went on to win first place at the regional completion in Newburg Oregon. My play went on to be performed at the international level in Pennsylvania, which consists of 7,000 different schools from all around the world. Even though it did not place, what it showed me is that anything is possible!
 
I am very engaged in living life even with this energy depriving disease. Two years ago I was given the opportunity to assist a close friend of mine who used the video he and his friend produced to assist in launching De:terminence a non-profit which has come together to assist those like me affected by a debilitating disease to accomplish physical feats which might be hard to complete alone. I am also very involved in the NorCal ride with Kyle Bryant. I have ridden the past three years to bring awareness and funds to find a cure. I travel love to spend time with friends and family even parachute out of planes in my spare time. Just about a month ago I went to get a new addition to my family and life. I was at team training for 2 weeks and at the very end of those weeks, I was able to graduate with 10 other friends and bring home my new service dog, my forever friend, Malakae. He is extremely helpful to me. He helps me with everyday things that are a challenge for me to do myself. 
 
I am not defined by FA I am who I am and push through each day optimistic we will find a cure. I still have my dreams and goals and a future ahead of me. I may have a rare challenge that I’m faced with but FA hasn’t stopped me so far and it definitely won’t keep me from my future. 
 
“I’d rather be a could-be if I cannot be an are; because a could-be is a maybe who is reaching for a star. I’d rather be a has-been than a might-have-been, by far; for a might-have-been has never been, but a has was once an are.” –Milton Berle
 
 
 

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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