published on March 25, 2014 in Woodlands Online
THE WOODLANDS, Texas–Rarity is the greatest challenge orphan diseases face. Affected patients are spread out across the country and around the world. Less than 100 children in the United States suffer from Batten disease: a rare, genetic neurodegenerative disease that affects children and is always fatal. The goal of Beyond Batten Disease Foundation (BBDF) is to consult and collaborate with like-minded groups such as other neurodegenerative disease foundations and Batten families across the globe to pool the resources and funding necessary to drive treatment-based research. There will only be one clear measure of success: providing treatments and a cure for Batten disease.
In April, Batten communities from across the globe will come together to raise funds and awareness for treatments, and a cure for Batten disease at BBDF’s 4th Annual Run to the Sun Relay. Hosted in Austin, Texas, over 25 teams of runners will run more than 90 miles in a spectacular overnight journey through the Texas Hill Country. Run to the Sun serves as an opportunity for all Batten communities from different cities, states and countries to join forces to raise awareness and funds for research. Each leg of the relay will be dedicated to a child suffering from Batten disease. Along the route, participants will get the chance to meet and learn about the children that they are running to save. In the past, teams of runners from other Batten communities made the journey to Austin to participate in the relay in person, while some created virtual teams and ran the 90 miles with us from miles away.
This disease affects Will Herndon here in The Woodlands, Texas. Will will be honored at this year’s relay by having a leg of the race dedicated to him. Runners will be able to view pictures and a biography of Will, giving them the opportunity to get to know who they are running for.
The Herndons started the Will Herndon Fun of the Beyond Batten Disease Foundation in 2009, and in the past four years, have done so much to increase funding and awareness for Batten disease. To watch their story, click on the link below.
Finding treatment and a cure for juvenile Batten disease is a cause that is present and necessary in our community. Please help raise the much-needed awareness about this devastating disease by sharing Will’s story.
To learn more about Run to the Sun, contact Mary Beth Kiser at mbkiser@beyondbatten.org or 512-275-2600.
For more information about juvenile Batten disease and Beyond Batten Disease Foundation, please visit the website below.