5th Annual Run to the Sun Relay Benefiting Beyond Batten Disease Foundation
January 1, 2015- Austin, TX- Imagine being able to see the beauty of the sun and the world around you and then one day you wake up and you are diagnosed with a rare and fatal disease and you are going to go blind at the young age of five. That’s what happening to a beautiful little girl, Christiane Benson from Austin and to hundreds of other children across the country.
Her parents, Craig and Charlotte Benson were devastated. The disease strikes otherwise healthy children. There is no treatment. There is no cure and the disease is fatal. Craig and Charlotte Benson of Austin decided they could either crumble into sadness and defeat or do something to help make a difference. They created Beyond Batten Disease Foundation in 2008 after their daughter, Christiane, was diagnosed with Batten disease.
Benefitting the Beyond Batten Disease Foundation, Run to the Sun Relay is an overnight, long distance relay and fundraiser that starts each year at Enchanted Rock State Park and ends at Camp Mabry in Austin, Texas.
“The relay is an opportunity for the Austin community to help Christiane and other children who suffer from rare diseases. The relay is also powerful and symbolic, in that, runners will run overnight in the dark experiencing what these children go through on a daily basis as they lose their sight and are in darkness. It is inspiring when everyone gathers at sunrise with a renewed effort and hope to find a cure,“ said Craig Benson, Christiane’s dad and co-founder of the Beyond Batten Disease Foundation.
Beyond Batten Disease Foundation is looking for teams to participate. You don’t have to run the 90 miles by yourself. You can have a team of six or more people.
We need 25 teams of runners that will run more than 90 miles in a spectacular overnight journey to raise money and awareness for juvenile Batten disease, a rare, fatal, neurodegenerative disease that affects children.
The 5th Annual Run to the Sun Relay will begin on April 11 and will end with a sunrise celebration and 2K Fun Run on April 12. Over 400 people are expected to participate. All participants and their families, as well as friends of Beyond Batten Disease Foundation are encouraged to attend the sunrise celebration breakfast held at Camp Mabry.
Everyone will stand together at sunrise to acknowledge the strength of all those affected by Batten disease and envision a world where this devastating disease no longer exists.
“We are running to the sun, to the hope, to the light, to the dawn of a new day where Batten disease no longer exists,” said Charlotte Benson, Christiane’s mom and co-founder of the Beyond Batten Disease Foundation.
Run to the Sun was created five years ago by the parents of an Austin sixth grader with juvenile Batten disease. Each year, her teachers and family friends form teams to run, and her friends from school, work as volunteers during the race. This is a remarkable story – about an unusual race and an unusual family, who responded to this devastating diagnosis by working to make a real difference.
Over the past 4 years, the relay has raised over $1.3 million to support Batten disease research. This year, the foundation wants to increase our total to $1.7 million, but needs the support and participation of the Austin and Batten disease communities to reach that goal. Whether old or young, fast or slow, near or far, this event offers a variety of opportunities for both runners and non-runners to get involved in the fight to eradicate Batten disease.
BBDF would love your help in publicizing registration for this event now, and in covering Run to the Sun on the day of the relay. The foundation is looking for runners to participate in the relay and for volunteers to support them as they run through the night. The 2K Fun Run is open to people of all ages and speeds.
This is a fantastic opportunity for many kinds of coverage, including a fun way to keep New Year’s fitness resolutions, a medical story, and an education story about the involvement of local teachers, or a live shot on the night of April 11 or the morning of April 12.
To learn more about Run to the Sun, please visit http://www.runtothesunrelay.com or contact Mary Beth Kiser at 512-275-2600. Foundation staff will be happy to connect you with runners, with volunteers and with families affected by juvenile Batten disease.
For more information about juvenile Batten disease and Beyond Batten Disease Foundation, please visit http://www.beyondbatten.org.
Click here https://www.youtube.com/watch?v=n9-7JZtA2EU
to watch the inspirational recap video from Run to the Sun Relay 2014.