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FARAFARA Cure FA

11th Annual Fuzzy Buzzy Golf Tournament

Sunday, September 7, 2014 was the 11th Annual Fuzzy Buzzy Golf Tournament. I am amazed every year at the length this tournament has been going. When the Fuzzy Buzzy started, there were not many other FARA fundraisers, but looking at the calendar these days, it’s a packed schedule. Once again, this year, was a great success. We raised $20,000 for FARA and even more awareness! This brings the 11 year total to $125,000, furthering research to find a cure for FA.

 

image We had a full course with 138 golfers, and a shotgun start at 1 o’clock. The weather was perfect, sunny with a breeze. We had lots of FA patients, friends, and family members including Richie Currier and the FA Project, www.FAProject.org. Jean Walsh, Carl Estabrook, Jennifer Mcleod, Liz Clark, Jamie Plourde, Tiffany Gambill, friends of Don Royer & Matt Diiorio, and the most important guest was Tom Trovinger and his family, making the trip from Maryland. Tom is a regular at the Fuzzy Buzzy but unfortunately missed last year due to a medical issue. This year he was back, adding to the days’ success.

After the day of golfing, the players headed to the clubhouse for dinner, raffles, and announcements of game winners. Next came speeches. I gave a quick speech, followed by my father and uncle. Kyle Bryant was intended to give a speech, but because of a series of flight delays he missed the tournament.

The following afternoon Kyle and I met with a pharmaceutical company working on finding a cure for us. We wanted to put a face and a story behind the research they are doing. The group at RaNA (www.RaNArx.com) is doing great work and briefly shared their ideas. They really enjoyed our meeting and now have a personal perspective on the urgency behind their work. Meeting with RaNA really showed me the importance of grassroot fundraising. And all of the hard work of the Fuzzy Buzzy is making a difference!!

Erin

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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