2016 FARA Energy Ball
I’d first like to admit that I’ve been struggling to write this blog post for a week… How can I convey all the exciting progress presented at the USF Symposium and the warm support shared at the FARA Energy Ball? In short – I can’t. Words and pictures on a website can’t do justice to the surreal experiences I shared last week in Tampa, Florida. So rather than try to capture all the emotions of those three days, I will report on the scientific progress (for those that missed the live stream video), and describe the basic flow of the weekend, in hopes that it will inspire others to attend next year.
We began the symposium with Dr. Judy Genshaft, President of USF, welcoming everyone to Bull country and reminding us of USF’s commitment to developing a cure for FA. Then Dr. Zesiewicz (Dr. Z!) of the USF Ataxia Research Center provided a quick overview of major clinical trial results over the past year. At previous symposiums, this is where researchers would speak about results in their own labs but… Surprise! …the patients stole the show. Alison Avery, Anna Gordon, Sean Baumstark, and myself took the spotlight to talk about our experiences participating in research studies and clinical trials. There were some laughs, some tears, a few on-stage selfies, and always a great perspective into different journeys living with FA – we made sure the audience got what they paid for! (Which was nothing since the symposium was free and open to the public!) But our stories only tell half the story… Kyle Bryant joined us on-stage to moderate open discussion with key researchers and clinicians working on FA research and developing potential treatments. These discussions were split into four 15 minute sessions, which deserve a description below:
We had an amazing turnout for our first annual Family Fun Walk/Run. We were able to meet other families who are traveling through the FA journey with us. A special thank you goes to all of those who helped get this event off the ground and to those who volunteered their time to make everything run smoothly.
My buddy and co-founder, Bill Sabia, and I have been pretty much the ground crew on keeping the Claxton going for a lot of years. We had about 136 golfers this year with over 150 in attendance so it was a good crowd! We played this year at a beautiful private country club, The Country Club of Woodmore in Mitchellville, MD. A very nice facility and the day turned out to be sunny and warm; good golf weather!
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