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CHOP Symposium 2015

2015CHOP1Columbus Day weekend is my favorite weekend of the whole year. It is the one weekend a year when I go to Philadelphia and have the opportunity to see and hang out with my FAmily.

This Columbus Day weekend did not disappoint. On Saturday, my mom drove my brother, Chase, and I out to Philly so I could attend the Ambassador training program. This was so cool because instead of meeting and talking over WebEx, the FARA Ambassadors were able to sit around a table and learn more about FARA. One amazing thing that I learned was that FARA’s budget for 2015 is about $5 million. However, a mere ten years ago the budget was about $500,000! It amazes me how much FARA has grown in such a short amount of time. A majority of it can be attributed to grassroots fundraising along with rideATAXIA and the Energy Ball.

6th Annual Race for Matt & Grace

6thMattGrace1Most of us recognized September 25th as International Ataxia Day. One day later, nearly 300 people went a step further to support the 6th Annual Race for Matt & Grace. Bryant University in RI was overrun with the New England FA community coming together to support two of our favorite FA’ers. We ran, walked, and rolled 3.1 miles along a cross-country course to fight FA, together. Racers were digitally timed to spark the competition and officially place Friedreich in last place. Runners pushed through the pain to emerge from the woods at the top of the list, while walkers enjoyed a cool fall weather stroll with dogs, children, and family. 

F.A.T. Run

FATrun1On September 26th, the first ever F.A.T. 5k in honor of Pat Schrader, was held at SUNY Oswego. It was a beautiful sunny day with more people than we ever expected. Family, friends and friends of friends all joined together. It was truly overwhelming. Chrissy Mason, a trainer at Stability Fitness, pushed Pat through the entire race. It was priceless watching the expression on his face as they crossed the finish line.

After the race we gathered at The Shed for food, karaoke and a Chinese auction. Pat visited with friends and relatives he hadn't seen in quite a while. Watching his 81 year old grandma sing and dance brought us all to tears with laughter. It was an exceptional day. 

8th Annual McDonnell Music Festival

2015McDonnelMusic1When traveling to the 8th annual McDonnell Benefit concert it took me through beautiful upstate NY. It turns out that Queensberry is on the shores of Lake George, at the base of the Adirondack Mountains. In a few weeks the leaves will be changing from green to brown and orange, and it will be one of the north east's biggest autumn attractions.

The event took place under a pavilion, at an Elk's Lodge. The first thing I noticed was the abundance of homemade baked goods. I am a sucker for an apple cider doughnut. I then noticed the baskets that were up for auction. The ladies who made these baskets starts designing and thinking of next year's baskets a year in advance. After making my way through the gauntlet of baskets, my attention was drawn towards the stage. With a full P.A. system, and some amazing looking equipment this was ripe and ready for some rocking. 

2015 USF Health Scientific Symposium and FARA Energy Ball

2015SEB1Every year, part of the FAmily migrates down to Tampa, Florida for the FARA Symposium and Energy Ball. 2015 was no different! We had a record number of pre-registrations (300+) for the symposium and a great turn out.

The symposium kicked off with a warm welcome to the University of South Florida (USF) by Dr. Clifton Gooch, director of USF Neuroscience Collaborative, Neurology, College of Medicine, and USF President, Judy Genshaft. They updated everyone on how dedicated the university is to finding a cure for FA (we love you, USF! Go Bulls!).

FARA Executive Director, Jen Farmer, and FARA President, Ron Bartek, gave an update on all things FARA. They spoke about the progress in FA research worldwide. Very exciting! They reiterated the value of the organization’s 2,600-member patient registry in bringing together all its stakeholders, encouraging the FA community to get involved in completing the registry. 

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