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UCLA/FARA Friedreich's Ataxia Patient Symposium

On February 23, 2018, I attended the UCLA symposium on Friedreich's Ataxia put on by FARA in Torrance, California. I decided to attend this event because it was only about 230 miles from my home. Since my diagnosis in 2002, I had never actually personally met another person with FA. Needless to say, I was very excited to attend the event.

I was not disappointed. After meeting several fellow FAers, they were extremely friendly and immediately made me feel like part of the FAmily. For many years I have been wearing a mask of sorts as a coping mechanism. Putting up this front has been completely exhausting. It was a wonderful feeling to drop the mask and be completely open and honest with other FAers. It was great to discover that myself and a fellow FAer had both fallen and broken off our front teeth. We were both laughing while we were telling the story of this similar experience. Whenever I have told this story to someone without FA, they don’t quite know how to react and it becomes somewhat awkward. My tooth has been completely replaced so I think it’s a funny story. Words really can’t explain the feeling of removing the mask, even if only for one day. 

2018UCLAsymposium

Even though I have been living with my diagnosis for the past 16 years, I had very late onset and my symptoms have progressed extremely slowly. Meeting fellow ataxians was a grim reminder that Friedrichs Ataxia is a progressive disorder. Many of those that I met exhibited much more extreme symptoms then I have ever felt. This caused me to take pause and be extremely thankful for the opportunities that I have had so far in my life. This has also given me a sense of urgency to complete those things that I want to do while I still can.

With regard to the symposium itself, I was truly amazed with the cutting edge science and technology that is being utilized in trying to find a cure or treatment for what is an extremely rare condition. I had pretty much given up hope that there would ever be treatment or a cure. However, after attending the symposium, I have discovered a new hope.

I will certainly be looking forward to attending any future event where I can spend more time with my newfound FAmily.

Community Contrib Alex Merr

2018UCLAsymposium 2

My name is Gavin. I’m 28 years old. I’ve knowingly had Friedreich’s ataxia 13 years. Recently, I attended the 2018 FARA-UCLA symposium, my first; a fact I’ve been kicking myself for since because the people met and knowledge gained at are invaluable in my fight with FA.

Community Contrib GavinOlda

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