by Laura Waltzer in Lubbock Avalanche Journal
published April 12, 2012
Texas Tech fraternity Sigma Nu will host a charity concert, Rattlesnake Roundup, headlining Texas country artist Robert Earl Keen tonight to raise money and awareness for the Beyond Batten Disease Foundation.
“Every day has to count; every day is a gift,” resounded in Brett Hartig and Kyle McAlonan’s hearts as they learned about the Benson family and their daughter, Christiane’s, struggle with Batten disease, a rare inherited neurodegenerative disorder, while watching the foundation’s promotional YouTube video last Christmas.
Moved by the Benson family’s story, Hartig and McAlonan, president and rush chairman, respectively, of the fraternity, vowed to create the concert.
Keen, with openers The Benton Leachman Band and Haden Burchard, will perform from 6 to 10 p.m. at the Lonestar Amphitheater. Tickets cost $20 in advance or $25 at the door.
Early symptoms of Batten disease show between the ages of 5 and 10, and include seizures and vision problems.
Symptoms evolve from personality or behavioral changes to blindness; physical and mental incapacitation, resulting in 24-hour care; and ultimately lead to death by late teens or early 20s.
The disease, occurring in every two to four children out of 100,000 births, is a common name of a group of conditions known as neuronal ceroid lipofuscinoses (NCLs), and without any known treatments.
Beyond Batten Disease Foundation was created in 2008 by Craig Benson, father of Christaine, to research the treatment and cure, as well as health screening for families who might carry destructive illnesses similar to Batten.
“Since Batten disease is so rare, the government will not fund any type of research,” Hartig said. “When Benson’s daughter was diagnosed, he began the foundation in search of hope for his family and any others who are suffering from this disease. Sigma Nu is proud and honored to help with this organization.”
With a majority of members from the Austin area, where the Benson family lives, Hartig said the cause remains important to the group of young men.
Though a majority of the foundation’s funding comes from private donors, Hartig said the fraternity feels blessed to contribute to the research, referring to their event as a drop of water in a big pond.
“I know in terms of dollars, what we’re contributing is nothing compared to the amount others donate,” Hartig said, “but I think it’s more than that. It’s the fact that a West Texas fraternity is focusing on this amazing foundation that’s going to change so many lives. Our support and the awareness we’re raising means more than the money we’ll donate.”
Besides research for a cure, the foundation focuses on screening tests for family members. Since a majority of NCLs diseases occur through genetic inheritance, the foundation is fighting to promote a service that will help families detect genes which could ultimately cause over 600 life-threatening diseases.
Batten disease, for instance, only occurs if both parents remain carriers for the illness. Though being carriers does not necessarily mean their child would be affected, the foundation hopes screening tests will provide parents knowledge of potential diseases.
Benson, also CEO of Rules-Based Medicine, a biomedical corporation that contributes to the research of treatment and a cure for Batten disease, said he and the foundation are honored for the work of Sigma Nu.
“This event is a beautiful example of an extended community that has enabled tremendous progress to find a treatment or cure, as well as developing tests,” Benson said. “These guys are a real blessing for my family and our foundation. We’ll be forever grateful.”
The Benson family, who has known about their daughter’s disease for 3½ years, rallies around a national and international support system. Describing the news of his daughter’s diagnosis as a blow to the family, Benson said their strong faith and progress through the foundation gives them hope for the future.
Because of the rarity of this disorder, Benson said families rely on each other, giving tips and support in ways doctors cannot provide.
“They understand what it’s like to have a child deteriorating right before your eyes,” he said. “They can provide comfort and ideas in a way no other person can.”
That camaraderie inspires the success of the Beyond Batten Disease Foundation, driving all those involved to make a difference to the small community of families who live with the disease.
For more information regarding the research and foundation, visit www.beyondbatten.org.