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FARAFARA Cure FA

Claxton Classic and Wing Party

To kick off the fun (and their wonderful fundraising), Bill Sabia, Randy Sisulak and the CLAXTON CLASSIC Golf Tournament hosted a great wing party at Hooters, Baltimore Inner Harbor on July 23rd. Over-looking the Baltimore Harbor, it was an absolutely beautiful, mild evening in Charm City for a party. Hooters has the best wings (or so I’ve heard, FA has made it too hard for me to eat wings! I can’t hold onto them!), so the all you can eat/drink special appealed to the public even if they had never heard of FARA. Yes, it was definitely the wings…
 
I had the pleasure of meeting both Bill and Randy, along with their families, co-workers and friends. I’m not sure how I can describe what truly incredible people they are. They are humble and kind and are willing to bend over backwards to help the organization out of the goodness of their hearts. Upon meeting them you will feel their warm spirits. We are lucky to have people like them on our side!  Ron came and gave a brief update on FARA and the many, exciting, upcoming clinical trials for a potential treatment for Friedreich’s Ataxia. I’ve seen FARA grow by leaps and bounds in the past seven or so years since I’ve become involved and a lot of the organizations growth begins with the community coming together and planting seeds (i.e. grassroots fundraisers) such as the Claxton Classic. One week after the wing party, Bill and Randy came together to host the Claxton Classic Annual Golf Tournament. Unfortunately, I was unable to attend the event, but heard about the wonderful time had by all! And they aren’t even done for the year! On September 12th, the Claxton boys will be back at in again with what is sure to be another great party/fundraiser at the Beer Garden, right in the heart of Baltimore’s Power Plant. A Claxton Classic mini Golf Tournament is also in the works. With the support of great people like these, FARA is sure to keep moving forward and find a treatment for Friedreich’s Ataxia. I’ll be eating Hooters wings in no time! 
 
More pictures of the event are on the photographer’s website larrybowers.com . Go to “albums” and you’ll see CLAXTON CLASSIC!
 
 
 
 
 
 
 
 
 
 
 
 
Open to everyone, the Claxton Classic golf tournament fundraiser was held in Windsor Mills, MD at The Woodlands golf course on July 31, 2015.  It has completed its 33rd year as a charity golf tournament, and holds the honor of being the oldest charity golf tournament in Maryland.  The event is named for founder, Roger F. Claxton, who passed away in 2008.  The tournament continues as a generous supporter of FARA.
 
We had a beautiful Friday for the Claxton Classic!  Very lucky considering all the lousy weather, rain, humidity, etc. we have been having all summer out here in Maryland. We wound up with close to 130 golfers coming from about 10 states. Pretty amazing. We were also very happy to have Ron Bartek and Kyle Bryant join us for the day!!  Having those two along with our longtime friend, Erin Kiernan, we definitely had full support and participation from FARA!
 
Considering we do not collect a single penny from corporate sponsors, we were still able to achieve a donation for FARA of about $12,000.00. We hope to start going after corporate sponsorships next year so we can pump the donation up significantly.  But we are not done yet with our effort to add to the donation. On September 12th, we are holding an Oktoberfest party at the Baltimore Leinenkugel’s Beer Garden. That should be a lot of fun and work out well as a fundraiser.  We are also looking to do a miniature golf tournament either this fall or early spring. Regardless, we are on the move to help FARA as much as we can. 
 
The Claxton Classic is always a fun time.  Knowing that we are contributing to such a worthy cause as FARA makes the day even more memorable.  It was wonderful to see Ron Bartek and Kyle Bryant could join the group this year.  And of course having Erin Kiernan there again was great.  She is the centerpiece of the Claxton Classic.  Looking forward to another great event in 2016! 
 
Besides a great day of golf with friends, this year’s Claxton Classic brought about such generosity in working towards a cure for this terrible disease, FA. Most of the golf cash prize winners also donated their winnings to this very worthy cause.  It was also great seeing Erin Kiernan and her family at the tournament, plus meeting a new friend in Kyle Bryant. This must be my 20th Claxton Classic tournament and each year brings renewed friendships with a truly caring group of people.  Hearing of the great strides being made in FA research presented by Ron Bartek really re-enforced how focused action can bring about positive results.  Can't wait until next year’s 34th Claxton and learning more of the progress is being made to eradicate this disease.  All the best to FARA!  
 
 
 
 

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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