AUSTIN, TX — Austin-area golfers are getting ready to take a swing at juvenile Batten disease during the Fourth Annual Brake Specialists Plus “HOPE on the Green” Charity Golf Tournament on Friday, October 19 at Grey Rock Golf Club.
The popular tournament will help raise critically needed funds for Beyond Batten Disease Foundation which works to eradicate juvenile Batten disease, a rare, inherited and fatal neurodegenerative disorder that occurs in young children.
“Hope on the Green is a great way for Central Texas golfers to enjoy a round of golf while also helping to save children’s lives,” said Jamey Whitlock, Executive Vice President, Brake Specialists Plus Total Car Care, title sponsor of the tournament. “Proceeds from the event help the foundation to continue funding live-saving research around the world to treat, cure and prevent this devastating illness.”
Although the tournament is expected to sell out again this year, registration currently remains open for foursomes as well as individual players. Participants will enjoy a fun-packed afternoon and evening at one of the region’s best golf facilities. Activities will include: lunch catered by Benji’s Cantina and dinner provided by Grey Rock Golf Club; 18 holes of golf on a stunning Texas Hill Country course designed by renowned golf architect Jay Moorish; putting, chipping, longest drive and hole-in-one contests for prizes such as TaylorMade and Titleist clubs and bags; a live auction, including memorabilia autographed by well-known sports and music personalities; and live music following tournament play.
Juvenile Batten disease occurs when parents who unknowingly carry the gene mutation for the disorder both pass it onto their offspring. Children are diagnosed when they become symptomatic, usually between the ages of 5 and 9. The illness causes seizures and progressive vision loss leading to blindness. The condition eventually becomes mentally and physically incapacitating and is fatal by the late teens or early 20s.
Because Batten disease is so uncommon, there is very little government support for research. Beyond Batten Disease Foundation funds a growing number of research initiatives in the United States and abroad to develop a treatment and cure. The foundation also has led development of a rare disease genetic test to diagnose and prevent not only Batten disease, but also more than 600 other serious – often fatal – inherited, childhood illnesses.
“All of us fighting Batten disease greatly appreciate everyone who participates in Austin’s Hope on the Green tournament – Jamey, the Brake Specialists’ team and, of course, all the golfers who come out to play,” said Craig Benson, who co-founded the foundation with his wife in 2008 after their young daughter was diagnosed with Batten disease. “The event is an important fundraiser and also helps us raise awareness of and galvanize ongoing support for our cause.”-
In recent years, the foundation has underwritten some of the world’s most promising juvenile Batten disease research. This includes funding a team of researchers at the Jan and Dan Duncan Neurological Research Institute at Houston’s renowned Texas Children’s Hospital. The team has identified drug compounds that may improve brain function in children with Batten disease and currently is analyzing disease models to study long-term effects on progression of the illness. The foundation also has brought in regulatory consultants to partner with the researchers at Texas Children’s Hospital in developing a path to FDA approval for a human clinical trial of the drugs.
Other foundation-funded projects include a partnership with the American Brain Foundation to create the first clinical research fellowship in juvenile Batten disease; research support at Italy’s Telethon Institute of Genetics and Medicine using robotic technology to screen hundreds of drugs for their potential to treat Batten disease; and additional research at London’s King’s College and the University of Iowa to learn more about Batten disease cell function.