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FARAFARA Cure FA

Christina Logan

Hello! My name is Christina Logan! I am 23 from Bucks County, PA. I come from a loving family who has helped shape who I am as a person today. They taught me how to be a good and striving person, and they have given me their unconditional love from the start. We have such a strong bond that nothing could tear us apart. Family truly means everything and I know they are here for me until the end.

So far, I have led a very fulfilled life with amazing experiences! Growing up, music has taken up a huge part of my life. I was very active in the musical departments at school. Since third grade, I've played the viola, piano and even tried the drums! In high school, I participated in the school orchestra, marching band and choir. My senior year, I even made first chair viola! I was fortunate enough to travel overseas for each group. I went to Italy, Ireland and England. They were the most incredible life events and I wouldn't change them for anything!

At 17 years old though, things started to turn around. Now anyone who knows me could say I was always a clumsy girl. I would easily trip on my own two feet. The funny thing is every time I would see my pediatrician, he noticed my balance was off and I had no reflexes, but he thought it had to do with my slight scoliosis and/or being a clumsy kid. When I couldn’t take the confusion and frustration anymore, my family and I were determined to find an answer. After four years of four different hospitals, numerous tests and unanswered questions, we finally got an answer. I was diagnosed at Johns Hopkins University.

When I was diagnosed, I was still attending school in Providence, RI. I went to Johnson and Wales University studying Hotel & Lodging Management. When I was diagnosed, I was going into my senior year of college. It was difficult for me to be on my own, living so far away from my family with being new to living with FA. But when I learned about FARA and how people come together from all over, I wanted to get involved! I attended Matt Dilorio’s race in Bristol, RI and since then, the Dilorio’s have been my second family.

Over the years, my symptoms have progressed. I suffer from nerve damage starting from my feet up to my arms which causes numbness and pain. I have energy deprivation, which causes me to become more tired and trip and fall more easily. My speech has become slurred, which makes it difficult to get my words out. And lastly, I have trouble sleeping at night because my legs are in such pain. I recently found out I will need some type of walking aid, such as a cane or rollator.

Since, I graduated JWU in November 2012, I moved back home to Pennsylvania, and have been working in Philadelphia, PA. I recently moved into a beautiful apartment in Center City, Philadelphia in March of this year! I currently work at the brand new, Home2 Suites Philadelphia Convention Center Hotel! I am so thankful for my family for giving me this independence and helping out anyway they can to let me lead a normal, independent life before matters could get worse. I try to lead a positive life, taking each day as it comes.

My family and I are so grateful that we live in the suburbs of Philadelphia. We are so close to CHOP and Dr. Lynch. He is brilliant and is doing whatever it takes to find a cure for FA! I recently attended the Ride Ataxia and 6th Annual Friedreich’s Ataxia Symposium on October 13th and 14th this year. I met so many inspiring individuals who even though they are faced with this battle, they have the strength and thrive to move forward to find a cure for FA. I am so happy to be a part of a wonderful community of FARA and now an FA Ambassador!

 

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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