by Andrew Ball in the Austin American Statesman

published May 8, 2011

Craig and Charlotte Benson had never heard of Batten’s disease before their then-5-year-old daughter was diagnosed with it in 2008.

But when the Austin couple learned Christiane was afflicted with the fatal illness, they threw themselves into finding a cure. In today’s column, Craig Benson writes about the nonprofit group he and his family started: the Beyond Batten Disease Foundation.

What is the Beyond Batten Disease Foundation? The foundation’s mission is to eradicate Batten disease by raising awareness of it and generating funding for research to cure and prevent this deadly illness. Batten disease is a rare, degenerative and fatal neurological disorder that children can inherit if both parents carry the genetic mutation for it. It strikes without warning, typically between ages 5 and 10. It first causes vision loss and seizures, then progressive impairment of cognitive and motor capacities, then death during the late teen years or early 20s. There currently are no treatments or a cure.

Why was the foundation started? Because Batten disease is rare (1.2 out of every 100,000 live births worldwide), there is very little federal funding for research on treatment and prevention. So we established the foundation to raise money for researchers to develop a cure and a test to screen for the genetic mutations that cause Batten disease and more than 600 other serious — and often fatal — conditions that kids can inherit. The hope with the test is to eliminate these devastating diseases in future generations. This strategy has proved successful on a small scale with Tay-Sachs disease.

What do you spend your money on? Ninety-three percent of the money we raise — a huge percentage by nonprofit sector standards — goes toward programs (versus operating costs) to accelerate the discovery of a treatment and the test that screens for genetic mutations. The foundation gave a $500,000 research grant to Texas Children’s Hospital and very generous friends of ours donated another $2 million. We’ve also invested $1.5 million with the National Center for Genome Resources to develop the carrier-screening test.

Talk about your Run to the Sun relay. The overnight relay run starts Saturday at 2:30 p.m. atop Austin’s scenic Mount Bonnell and finishes at sunrise May 15 at Enchanted Rock State Natural Area. That morning there will be a 6 to 8:30 a.m. breakfast celebration featuring live music by the Gospel Stars. About 30 teams, each with up to eight members, have registered to run the 95-mile course through the Texas Hill Country. Each team has pledged to raise a minimum of $5,000.

Is there still time to participate? Interest in Run to the Sun has been overwhelming. We’ve already exceeded our projected number of teams and runners. There’s still time to register a team, and you can make a donation or come out to cheer on the runners. Our biggest need at this point is for volunteers, so we encourage anyone who has time next weekend to contact us through the website (

What do you see for your future? Every day is a blessing and we cherish each moment with our precious Christiane and our son, Garland. At the same time, we know that the years ahead will be challenging for her and our family. Nonetheless, we remain very hopeful as we raise money to accelerate research for developing a treatment for Batten disease and the screening test. We will find a treatment for Christiane and other affected children and ultimately eradicate Batten disease.