Austin, Texas – October 5, 2015– The Beyond Batten Disease Foundation celebrated a family-fun night at Schlitterbahn in New Braunfels in September to raise funds to find treatments or a cure for juvenile Batten disease. The waterpark was closed for the private event, giving families’ access to the park’s waterslides with no lines. Attendees also enjoyed the Skycoaster, a combination skydiving, hang-gliding thrill ride where you fly over the park.
“We reserved the waterpark for the Beyond Batten Disease Foundation families that have supported us over the last few years. We wanted to celebrate family philanthropy and we couldn’t think of a better place than Schlitterbahn for this special event. As fast as you can run up the steps, you can come down the slide, all the while having all the slushies you could drink and all Dippin’ Dots you could get your hands on. We are so appreciative of our community and thank everyone for their continued support,” said Craig Benson, co-founder of the Beyond Batten Disease Foundation.
Craig and Charlotte Benson of Austin created Beyond Batten Disease Foundation in 2008 after their daughter, Christiane, was diagnosed with Batten disease. The fundraising event at Schlitterbahn was a way to thank the many families from the community who have donated their money and their time to help raise money for the foundation.
“We are so blessed to live in a community that has put their heart and soul into helping us with the foundation. I want to especially thank the amazing Family Night Committee: Chair Lisa Magids, Ashley Crider, Kelley Daniel, Ann Hojel, Kristen Nelson, Ashley Putman, Brannon Smith, Stacy Toomey, and Shannon Windham,” said Charlotte Benson, co-founder Beyond Batten Disease Foundation.
The committee urges everyone to Save the Date for next year’s event. It will be September 2016.
Batten Disease is a rare, inherited pediatric neurological disorder, which begins with vision loss and seizures, followed by cognitive and motor impairment. Currently, there is no cure and the disease is fatal in the late teens or early 20’s. This prognosis is unacceptable for Christiane Benson and the hundreds of children affected with this condition. Beyond Batten Disease Foundation (BBDF) supports research to treat and cure Batten disease that strikes young otherwise healthy children around the age of five.
About Beyond Batten Disease Foundation
Beyond Batten Disease Foundation (BBDF) is the world’s largest organization dedicated to funding research for a treatment or cure for juvenile Batten disease. Batten disease is a rare, inherited pediatric neurological disorder, which begins with vision loss and seizures, followed by cognitive and motor impairment, and ultimately death by the late teens or 20s. Since its inception in 2008, BBDF has raised over $15.5 million for research through donations, co-funding, leveraging and partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in Batten Disease. For more information, visit www.beyondbatten.org.