Austin, TX — March 28, 2012
Beyond Batten Disease Foundation today announced expansion of its “Run to the Sun” overnight relay due to popularity of the oversold 2011 inaugural event and strong registration so far for this year’s April 28-29 run. Event organizers are planning for up to 35 teams with as many as 350 runners in 2012 compared with last year’s total of 25 teams and 250 runners.
Also this year, the foundation is reversing the 95-mile course through the beautiful Texas Hill Country. Last year, the relay started atop Austin’s scenic Mount Bonnell and finished at Enchanted Rock State Natural Area near Fredericksburg. This year, runners will begin at Enchanted Rock on the afternoon of Saturday, April 28, and finish on Sunday, April 29 at the Austin Museum of Art’s Laguna Gloria, with a 6:00-9:00 a.m. breakfast celebration featuring live music by The Gospel Stars.
Based in Austin, Beyond Batten Disease Foundation is developing a treatment and cure for Batten disease as well as a test to screen for the condition along with hundreds of other serious, genetic, childhood illnesses. Batten disease is a rare and fatal inherited, neurodegenerative disorder that strikes young children. The condition initially causes vision loss and seizures, then progressively impairs cognitive and motor capacities, and ultimately results in death during the late teen years or early 20s. The relay run will help raise awareness of Batten disease and funding for the organization’s lifesaving work.
“Run to the Sun is a spectacular event in its own right, sure to be a highlight of the year for participating runners, but it’s also a way to help change the world – by raising funds for research to eradicate Batten disease and hundreds of other devastating disorders that seriously impair and even kill children,” said Lance Thompson, Run to the Sun’s creator and co-chair. “We encourage everyone to get involved – even if you’re not a runner, you can volunteer to help provide support to runners along the route, and we always welcome sponsors.”
A growing number of corporate teams have signed up for the run, including groups from Bulldog Solutions, Motorola, and Rules-Based Medicine.
Run to the Sun’s website has information on how to:
- Join or start a team
- Sponsor a runner
- Volunteer to help at the start or finish or along the route
- Become an event sponsor
Beyond Batten Disease Foundation was started in 2008 by Craig and Charlotte Benson after their then five-year-old daughter, Christiane, was diagnosed with Batten disease. Children born to parents who unknowingly each carry a gene mutation for Batten disease are at risk to inherit the condition but because Batten disease and so many other similar inherited, childhood diseases are uncommon, there is not much federal funding for research aimed at treatment and prevention.
In its three years, the foundation has developed the most comprehensive rare disease genetic test panel for detecting genetic mutations that cause Batten disease and more than 600 other devastating, rare conditions that strike and kill thousands of kids each year. 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.