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Quartermania for FARA

Quartermania 1On Wednesday, August 30, about 80 people gathered at Cabrillo Marina in San Pedro, California and raised about $3,000 for FA research. I know you're probably wondering what the heck Quartermania is because I didn't understand either until I played that night! So, I will try my best to explain.

A wonderful woman named Ann is in charge of hosting these fundraisers. She hosts Quartermania for different non-profit organizations and we were lucky enough to find her through my Aunt Kim who attended this event previously for another organization. Ann coordinates everything- she gets the vendors and materials needed for the event and all we had to do was find the venue and make the food pretty much.

As soon as you walked in the Marina Room, participants each paid admission which included dinner, cooked by my wonderful mother and Aunt Kim-they also received a token which was put into a community bucket with all the other participants numbered tokens and also a paddle(see picture). It was also an option to buy multiple paddles for a better chance of winning as well.There were about 8 vendors at the event , like Origami Owl, a customized jewelry company, a woman who put succulents in different everyday objects and a clothing boutique. The vendors were all small local business and the variety of prizes made this event awesome. We had about 15 donations for the raffle we chose to also have alongside Quartermania. Places like local restaurants, gyms, chiropractors and FARA all donated gift certificates and merchandise that we were able to give away as prizes. 

FA Indy Family 5k Run/Walk

FAIndy 17This was the second year that FA-Indy presented FA-Indy Family 5k Walk/Run. On Saturday, August 26, 2017, people gathered at Freedom Springs Park in Greenwood, Indiana to raise funds for the FA community. Bob Schlageter explained, “The events are to raise money to financially assist those with FA in the Indianapolis area to get to doctor visits, drug studies, and handicapped equipment. We are working with some local contractors to assist with home modifications to make things easier at home. We have already been asked to help with getting a battery for an electric wheelchair.”

The event had an increase of 68% attendance from last year—138 in 2016 vs 231 this year—and a 27% increase in donations—$5,500 in 2016 vs $7,000 this year. 

“We have 8 known in the Indianapolis area with FA, 4 of which were at our event. Our daughter-in-law was diagnosed 4 years ago and we started planning for last year’s kickoff event,” said Bob Schlageter. 

Kern County's Annual Reverse Draw for FARA

KCReverseD 17On April 1, 2017, our FARA Kern County Committee lead our Annual Reverse Draw to raise awareness and crucial funds for research! We had an amazing time of delicious food catered by Outback Steakhouse.  In addition to our amazing basket raffle, we added a Live Auction this year with several family trips and some other great items! Thanks to all who attended and to our wonderful sponsors to include Outback Steakhouse, Bitco, Cochran Mechanical any many more.  We raised a grand total of $16,135 for FA research! Our committee is so grateful to be a part of the grass roots efforts across the nation working to support Friedreich's Ataxia research! 

Inaugural Race for Matt & Grace Golf Tournament

MattGrace golf1

The first ever golf tournament on August 26th to support the Race for Matt & Grace fundraising group raised over $16,000 for FARA. But more impressive, we were able to fill the course with 34 foursomes making the long journey from RI to CT! (for those outside New England – yes, we are spoiled in RI and don’t drive anywhere outside a 15 minute radius… this is a big deal)

MattGrace golf2The Connecticut National Golf Club was ready for our FA community. Tucked away on a rural road in Putnam, CT, the course boasted challenging fairways, well-maintained greens, and came with perfect 70 degree late-August weather; a golfer’s dream day! Me and Friedreich decided to try our luck hacking away for 18 – why not?! Joined by my brothers and best friend, our foursome joined the 33 others in a scramble-format tournament, established to raise funds for FA research and find the best golfers in the bunch. I started golfing at a young age, but have become quite terrible from lack of practice and FA. Neither mattered on the 26th. We had a blast playing the course and enjoyed the “extra-curricular” activities at various holes. From putting tournament, to open grill, to hole-in-one challenges, to pre-tee-off drinks (definitely helped my nerves), to raffles, to free food/drink at multiple holes, to silent auctions, … there was never a dull-moment all day (and I never went hungry!). All the add-ons made the registration fee a bargain and helped generate more donations to FARA in fun ways. Despite many divots, missed fairways and duffed shots, I laughed and smiled the entire day – great company at great events for a great cause will always do that! 

Louisiana Screenings of 'The Ataxian'

All around, as far as you can see is flat - green fields and trees dot the distant horizon in all directions. The humidity hugs us all inescapably in its uncomfortable, hot, sticky, unwelcome embrace, like that one aunt at Thanksgiving. Kyle Bryant champions the theater screen as somewhere nearby an alligator sniffs the air and dives back into the brown waters of a bayou. The Ataxian has indeed been screened for the first time in Louisiana.

There were two showings in the state of Mardi Gras parades and boiled crawfish.

Rachel Walker describes the screening in North Louisiana:

The Ataxian opened to a full house at Ruston's Celebrity Theater on Saturday, October 19. We were fortunate to raise over $4,500 and increase awareness with a large audience.

Our efforts to publicize the documentary were given a huge boost by Mayor Ronny Walker (no relation to the Walker family!). Upon learning about FA and the film, Mayor Walker invited us to participate in his weekly radio program. Rick Godley, on-air personality of The Peach 99.3, became another instant member of the FAmily, as he made 2 additional radio broadcasts available to our family. Kyle Bryant also participated in a broadcast on the morning of the screening. 

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