Becoming Involved in the FA Community Was the Best Decision I’ve Made

Over the past few years, I have learned that Friedreich’s ataxia (FA) patients come to terms with their diagnoses in their own time. At first, I didn’t understand why some patients kept a distance from the FA community and the Friedreich’s Ataxia Research Alliance (FARA). I couldn’t understand other perspectives because of my immaturity, inexperience, and lack of knowledge about the illness. But meeting other patients and having in-depth conversations with them has changed my viewpoint.

I was fortunate that I accepted my diagnosis early on, but everyone’s experience is different. I soon learned to shut up and listen. Initially, my conversations were limited to Facebook Messenger and various ataxia support groups. Then I pushed myself to attend rideAtaxia events and symposia. It was the best decision I’ve made, and I am so fortunate to be part of such a special group of people.

I attended my first FA symposium at UCLA eight months after my diagnosis. It was my first time meeting other FA patients, their families, and athlete and FA spokesman Kyle Bryant. I felt so scared that morning that I considered staying home. I wasn’t sure if I was ready to get a glimpse of my future or to hear doctors and researchers talk about potential treatments for a disease that has no cure.

My family and I loaded into the car and headed up the 405 freeway. As soon as we arrived, I knew I was exactly where I needed to be. Everyone was so friendly. At the time, I wasn’t using an assistive device, but they knew from how I walked and my grasp on my mom’s arm that I was one of them. At that symposium, I was reassured by the amount of medical research being carried out into FA. And I wanted to be involved.

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I signed up to be a FARA ambassador a few months later. I felt welcome and supported right away. I was comforted knowing that I didn’t have to explain why I moved funny or why I was so fatigued after sleeping 11 hours.

The role solidified my new passion for raising awareness and getting to know the other FAers so I could pick their brains. I realized that the best way to learn was to ask questions. Google could only teach me so much.

It’s been three years since my diagnosis, and more than two since I became a FARA ambassador. I thank God every day for guiding me down this path and letting me see that I’m not alone in this fight against Friedreich’s ataxia.

I hope you take your time to come to terms with FA just like I hope you can push yourself to attend an event. I promise it will be the best decision you make on this FA journey. We can’t wait to meet you.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.