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FARAFARA Cure FA

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

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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