The Bensons' story is an incredibly heart-touching call for help to save their daughter. We want to contribute to finding a cure for Batten disease and protecting future generations from this and hundreds of other terrible genetic conditions.
Lubbock, TX (PRWEB) April 09, 2012
The Sigma Nu Fraternity chapter at Texas Tech University is encouraging everyone in the Lubbock area to participate in the first annual “Rattlesnake Round-Up,” an evening of great Texas country music, two-stepping, fried rattlesnake and more on Friday, April 13 starting at 6:00 p.m. at the Lonestar Amphitheatre.
Benefiting Beyond Batten Disease Foundation, the Round-Up will include a full concert performance by acclaimed singer-songwriter Robert Earl Keen, who just last month was inducted into the Texas Heritage Songwriters Association’s Hall of Fame. Opening acts for Keen are The Benton Leachman Band and Haden Burchard. Concert goers also will be able to feast on fried rattlesnake (until it sells out).
Beyond Batten Disease Foundation is working to develop a treatment and cure for Batten disease, a rare, fatal, inherited, neurodegenerative disorder that strikes young children. The devastating illness initially causes vision loss leading to complete blindness, and then progresses to seizures, cognitive and motor impairment, and ultimately death during the late teen years or early 20s.
The foundation also is developing a test to screen for Batten disease as well as more than 600 additional serious, genetic and often deadly, childhood conditions. In addition to being so comprehensive, the test will be easy to administer and more economically priced than the cost of an individual test for any one of the diseases on the panel. The scientific and medical communities have heralded the test as a major breakthrough and it has received extensive media and professional journal coverage around the world.
Based in Austin, the foundation was started in 2008 by Craig and Charlotte Benson after their then five-year-old daughter, Christiane, was diagnosed with Batten disease. Because Batten disease and so many other genetic, childhood diseases are uncommon, there is not much federal funding for research aimed at treatment and prevention.
Texas Tech’s Sigma Nu chapter adopted the foundation’s cause after learning about the Benson family through several fraternity members who are from Austin. A number of chapter members watched a video of Craig and Charlotte Benson telling their story and were inspired to take action.
“The Bensons' story is incredibly heart-touching, especially their call for help to save their daughter,” said Brett Hartig, the chapter’s president. “We want to assist them and the foundation in finding a treatment and cure for Batten disease. We’d also like to play a role in protecting future generations of kids from inheriting the illness and hundreds of other terrible, genetic conditions. Since government funding is so limited, we want to contribute to the cause and believe that we can have a significant impact.”
Additional Sigma Nu members working on the Round-Up include Darin Riley, event chair, along with Zachary Haber, Kyle McAlonan, Amir Ravassipour, Brendan Sheridan, and Austin Wiebel.
“We are always thrilled when new communities step up to join us in fighting Batten disease and other genetic, childhood diseases,” said Craig Benson. “We’re especially impressed in this case by the Sigma Nu and broader Texas Tech communities taking such initiative. All of us at the foundation deeply appreciate and salute these thoughtful, young adults working to make the world a better place.”
Tickets for the Sigma Nu Rattlesnake Round-up are available in advance for $20 through Select-a-Seat, the Texas Tech Student Union Building, or Ralph’s Records (3322 82nd Street, Lubbock), and also at the door for $25.
About Beyond Batten Disease Foundation
Beyond Batten Disease Foundation works to cure and prevent Batten disease, a rare, inherited neurological disorder that strikes young children, first causing vision loss and seizures, then cognitive and motor impairment, and ultimately death during the late teen years or early 20s. The foundation raises funds for research and is leading development of an easy and inexpensive, groundbreaking blood test to detect the gene mutations that cause Batten disease as well as 600-plus other rare but serious and often fatal childhood ailments. For more information, visit http://www.beyondbatten.org.