Friedreich's Ataxia Research Alliance - FARA Ambassador Program

2016 FARA Energy Ball

eb2016af1 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:

2016 Fuzzy Buzzy Golf Tournament

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Once again, my favorite day of the year, the Annual Fuzzy Buzzy Golf Tournament. This year was extra special because my Uncle Paul, aka Buzzy, has been running this tournament for 30 years! The tournament began in 1986 with a few guys having some fun and playing golf. As the years passed Paul wanted to put some meaning behind the tournament. He decided to make the Fuzzy Buzzy a charity event to raise money for the Friedreich's Ataxia Research Alliance. The first year about 50 players raised $2,400 for FARA. This year, the 13th year, we had 130 golfers and raised $18,000!!

FA Indy Family Fun Walk/Run

FAIndy 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.

We had a bit of a challenge as our original course was flooded from a heavy rain the day before. But two of our volunteers regrouped and came up with another course. The day of the event was perfect.

2016 Claxton Classic Golf Tournament

2016ClaxtonClassicGolfTournament 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!

As of now, our donation will be something like $5,000 and we still have one more event coming up on September 10th. That will be our 3rd Annual “Leinenkugel Beer Garden ‘Oktoberfest’ party for FARA.” We’re hoping for a great turnout!

FA Woodstock 2016

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Another amazing year in the books! FA Woodstock was once again the highlight of the summer for many people with Friedreich's Ataxia. Two days full of laughs, new friends, tie-dying, swimming, and so many new memories; this event was incredible :)

The beginning of this event was all about getting comfortable in a new setting and meeting the many other guests. There were many unfamiliar faces, which I thought was terrific; so many young families (people who have been newly diagnosed) who were able to find comfort in meeting a group of people with such similarities. The Hook's have such a great network of people out there; a seemingly endless number of people who wanted to lend a helping hand.