Introduction to Author: My name is Christina Logan and I am 24 years old living with Friedreich’s Ataxia for 3 years now. I currently live in Philadelphia working at the beautiful and prestigious hotel, The Rittenhouse as the Sales Systems Revenue Analyst.
Blog Title: I have Friedreich's Ataxia, but Friedreich's Ataxia certainly does not have me!
My name is Christina Logan and I have Friedreich’s Ataxia, but Friedreich’s Ataxia certainly does not have me! Friedreich’s Ataxia (FA) is a rare disease affecting only 1 in 50,000 people in the U.S. It is a debilitating, life-shortening, degenerative, neuromuscular disease. Symptoms can appear anywhere between childhood to adulthood. Symptoms include: loss of balance, slurred speech, nerve damage and heart conditions. I started noticing symptoms when I was a junior in high school. After 4 years of 4 different hospitals, numerous tests and unanswered questions, I finally got an answer.
The FA Community and I are hopeful for treatments of a cure due to the dedication and efforts of the research alliance group, FARA. FARA (Friedreich’s Ataxia Research Alliance) is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms. Raising awareness and funds through grassroots events or grants make the research of clinical trials possible!
I know when I was first diagnosed back in 2010, my family and I wanted answers if there will ever be a cure. After we traveled back from Baltimore, MD at Johns Hopkins Hospital, we did what anyone would do to seek more answers, look on the internet. Having Friedreich’s Ataxia can be an uneasy thing to learn about, let alone witness yourself, but that’s not what I am here to talk to you about today. I believe that every cloud has a silver lining and I am going to share with you how living with FA has affected my life positively.
Here are 5 ways that FA has benefited me:
1) I have become a FARA Ambassador who are positive and supportive peer representatives for the FA Community. I have the ability to connect with individuals who have FA from all over via webinar meetings once a month to discuss ways to get involved in the FA Community by working on new projects to raise awareness. I am currently working as a co-administrator for our Blog and the administrator for the FARA Twitter account. I was also featured in the Summer Advocate!
2) The Patient Registry has given me the chance to complete a clinical trial at Children’s Hospital of Philadelphia this last April. The Patient Registry keeps patients of Friedreich’s Ataxia in the know of upcoming research and trials that I qualify for and can participate.
3) I continue to make a difference by actively becoming involved in my own community. My family and I hosted our 2nd Annual 5K Race for Christina this last May. With the two years combined, we raised awareness and over $30,000 for FARA. This year, my family will host our 3rd Annual 5k Race for Christina 4 on Mother’s Day, which is May 10th in Bucks County, PA.
4) I continue to grow stronger as an individual by living in a major city on my own and working a full-time job at The Rittenhouse Hotel. It may not be easy, but I try to wake up each morning with a positive attitude. I’ve learned how to adapt to changes facing my own battles and the public.
5) Every individual and/or family that I have met in the FA Community is just simply inspirational and remarkable. I am so grateful to be a part of and connect with such an amazing group of people. They are my second family.
Recent news includes me being featured on PHL17 Eye Opener Philly to help promote awareness for Ride Ataxia Philly. The news story 5 portrays how involved I am with FARA by giving back to community. I touched many people’s hearts that they want to do another news story to help promote the 3rd Annual 5K Race for Christina! I couldn’t be more grateful.
Also, I recently found out that I've been offered to go to a Phillies game to watch the players during their batting practice on the field and also have a meet and greet with them to raise awareness and promote the race! Even though I have an incurable condition, I feel like I am impacted more positively then negatively.
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