Hundreds Participate in May 14-15 "Run to the Sun" Overnight Relay to Fight Batten Disease and 600-Plus Other Serious Childhood Diseases

Tuesday, May 10, 2011 Tropical Disease News
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AUSTIN, Texas, May 9, 2011 /PRNewswire/ -- Hundreds of runners are getting ready for the May 14-15 "Run

to the Sun" overnight relay through the Texas Hill Country to help fight Batten disease and more than 600 additional, serious and often fatal, inherited, childhood illnesses.  


Benefiting Beyond Batten Disease Foundation, the run starts at 2:30 p.m. on Saturday, May 14, atop Austin's scenic Mount Bonnell and finishes at sunrise on Sunday, May 15, at Enchanted Rock State Natural Area with a 6:00-8:30 a.m. breakfast celebration and live music by the Gospel Stars. Approximately 30 teams, each with up to eight members, will run the 95-mile course. Nearly a dozen companies, including Motorola Solutions, are sponsoring the inaugural event.

"Support for Run to the Sun from the Central Texas community and beyond has been incredible – the runners, donors and sponsors involved understand how important the foundation's work is," said Lance Thompson, event chair. "We hope the event will spread the word broadly because this truly is everyone's issue."

Beyond Batten Disease Foundation was started in 2008 by Craig and Charlotte Benson of Austin after their then five-year-old daughter, Christiane, was diagnosed with Batten disease. Children born to parents who both carry gene mutations for the rare but fatal, neurological disease are at risk to inherit the condition which first causes vision loss and seizures, then progressively impairs cognitive and motor capacities, and finally results in death during the late teen years or early 20s.

Because there is not much federal funding for research to treat and prevent Batten disease, the foundation raises money to develop a cure and eradicate the disorder. The organization partnered with the nonprofit National Center for Genome Resources (NCGR) to create an easy and affordable blood test that detects genetic mutations that cause Batten disease and 600-plus other terrible, rare childhood illnesses.  The test could be available by yearend.

"We are all unknowingly carrying potentially devastating gene mutations and passing them on to our kids," said Mr. Benson, who coincidentally is CEO of Rules-Based Medicine Inc., an Austin biotechnology company (which is not involved in developing the test). "We're working as quickly as possible to find a cure for Batten disease and launch the carrier screening test so people planning to have children can know their risks for transmitting hundreds of horrible conditions; then, they can evaluate their options."

According to foundation-funded research by the NCGR, each person carries nearly three genetic mutations that can cause these severe diseases if both parents are carriers. Better-known examples include Tay-Sachs disease, Cystic Fibrosis and Spinal Muscular Atrophy.  A carrier screening strategy similar to the one planned for Batten disease has been used on a smaller scale for Tay-Sachs disease and achieved an impressive 90 percent reduction among at-risk populations.

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

SOURCE Beyond Batten Disease Foundation


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