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FARAFARA Cure FA

Lonestar Benefit Bash Golf Tournement

Hero- a person who is admired or idealized for courage, outstanding achievements, or noble qualities

My family and I, as well as other families affected by Friedreich’s Ataxia (FA), truly believe our supporters who dedicate their time and hearts to help find a cure for FA are our heroes.

The 6th Annual Lonestar Benefit Bash Golf Tournament took place on Friday, June 6, 2014 at the Bridlewood golf course in Flowermound, TX. Usually, this event piggy backs Ride Ataxia Dallas in March, but due to poor weather conditions last year, it was decided to push the golf tournament to a later date in 2014. The FARA staff had a board meeting that day, so the local FA families played a bigger role in contributing to the success of the event.

"You have to be selfless in order to be successful;" -Nyle Pruitt "You have to be selfless in order to be successful;" -Nyle PruittI had the pleasure of hanging out with Nyle Pruitt this year, the world’s longest drive champion. He returned for his sixth consecutive year to help bring in thousands of dollars to our cause. As the teams approached the hole he and I were on, Nyle explained to everyone why he chooses to work this event every year. Six years ago, he received a phone call from a friend saying there was an upcoming golf tournament that raises money and awareness for Friedreich’s Ataxia. Initially, he told his friend that he was no longer interested in working charity golf tournaments. But Nyle quickly changed his mind after researching information about FA, how the FA community is involved with raising money and awareness, as well as meeting Kyle Bryant, founder of Ride Ataxia and a disabled athlete.

Dinner was sponsored by Outback Steakhouse and all the golfers, staff and volunteers enjoyed a great meal. An auction and award ceremony followed. However, before announcing the winners, Kyle Bryant gave a video presentation explaining the current research updates on therapies and clinical trials. I then educated the audience about FA and how one’s life and family is forever changed. Natalie Newman, Jason Dagley and Alex Dagley, all FA individuals, were with me in front of the audience. We were given a standing ovation.

One of the team members who won the golf tournament, tapped me on the shoulder and handed me the winning trophy. This gentleman wanted me and the rest of the FA community to know that we were completely and full heartedly their heroes.

The 2014 Lonestar Benefit Bash Golf Tournament raised $35,000 for FARA. All of the golfers drove the ball for FA research, contributing to the search for treatment and a cure. TOGETHER we will cure FA!

Emily

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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