NEWS RELEASE Fiona Rose Murphey Foundation Trail Ride TWHBEA Sponsors National Trail Ride To Benefit Fiona Rose Murphey Foundation; Helps Children With Rare Brittle Bone Disease Fiona Rose Murphey was born with seven broken bones 14 years ago. Since then, the charismatic young girl with an easy smile has endured nearly 100 more. She has lived most of her life in a wheelchair and has undergone 8 or 10 surgical procedures. Still, she remains a positive role model to others suffering from a rare genetic disorder, Osteogenesis Imperfecta (Brittle Bone Disease), which affects about one in every 20,000 children born in the U.S. each year. “It may seem unusual to others,” Fiona says. “But this is all I’ve ever known. Sometimes I don’t understand why I make such an impression on people.” The young girl is the face and namesake of the Fiona Rose Murphey Foundation, and on June 5 — 7, The Tennessee Walking Horse Breeders and Exhibitors’ Association (TWHBEA) is planning an ambitious nationwide fundraiser to help children with the disease. Coinciding with National Trail’s Day, the Fiona Rose Murphey Foundation National Trail Ride will span some six states and will even take place in Europe. Organizers are expecting more than 1,500 riders / campers across the country. So far, events are planned in Belvidere, TN, Black, MO, Keithsburg, IL, Colorado Springs, CO and Wemding, Germany. Additional sites are being confirmed in California and Washington. We had discussed becoming involved in a charity last year, said Gary Holt, TWHBEA Committee Member. I had the opportunity to meet Fiona and talk with her last fall. Fiona is an amazing and inspiring young lady, he continued. The work of the foundation in aiding children with OI and their families was a perfect match for our association. As an international organization we are excited to host this first of what will be an annual event to bring a greater awareness of OI and support the work of the Fiona Rose Murphey Foundation. Fiona was recently made a lifetime member of the TWHBEA. “I’m not really sure what all that entails, but it’s pretty cool,” Fiona said. “There are a lot of very kind people who obviously have my back. It’s always nice to be reminded how many people I have behind me.” For parents Francie and Ryan, a Grammy-nominated producer and an English teacher at Nashville’s Maplewood High School, Fiona’s positive outlook is a blessing they never expected. Before she was born, Ryan recalls doctors were mystified about what could be the problem with their child. Once born, it took a couple of days before a geneticist diagnosed the problem. “The doctors knew Fiona would be OK, but they couldnt tell us much about the prognosis or how the disease might affect her in the future,” Ryan said. “We had to be ready for anything. Francie and I spent four years just trying to figure this out. “It’s difficult on us and Fiona but she continues to amaze us with her outlook,” Ryan continued. “She reads all the time. She’s very curious and is a very forward thinking girl. There is a minimum $50 donation to participate in the 3-day trail ride and the ride is expected to draw enthusiasts from all across the nation. “We’ve had interest from riders across the United States as well Europe,” Holt said. “We’re extremely pleased with the response we’re receiving. We expect to sell out all event locations.” Concerts are being planned for the closing night (June 7) in every market. Grandfather and iconic singer-songwriter Michael Martin Murphey (“Wildfire” “Carolina In The Pines”) will perform at the Belvidere, Tennessee event. Other notable performers will be announced for the other events. Concert tickets will be available to the public as well. Participants in the rides need to make reservations for their campsite and stalls directly with the horse campgrounds. (More information is available by visiting tinyurl/ka2qqss). Additionally, a $25 minimum donation is available for day riders to participate on Saturday. For more information, visit: tinyurl/ka2qqss
Posted on: Fri, 24 Jan 2014 05:36:23 +0000
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