Three Austin-based runners help spread the word about Batten disease.

by Dane Anderson in Westlake Picayune

A small group of children across the world have been embroiled in battle for years, yet the majority of the population has never even heard of their fight.

Three Westbank moms have made it their mission to shed light on Batten Disease, an inherited and fatal neurodegenerative disease that appears in two to four babies out of every 100,000 live births in the United States. Symptoms typically manifest between the ages of 5 and 10, and it is often fatal by the late teens or early 20s.

“It’s just one of those things that just stops you in your tracks when you find out that a friend’s daughter has been diagnosed with this fatal disease that you’ve never even heard of,” said Jena Ehlinger.

Ehlinger first heard of the disease through friends Craig and Charlotte Benson, whose daughter was diagnosed with the condition. The Tarrytown couple founded the Beyond Batten Disease Foundation in August 2008 to raise funds and awareness about the disease and other similar genetic conditions.

Ehlinger, along with friends Kristyn Chambers and Jenni Rozas have committed to doing two half marathons a year to get the word out. They just completed their second at the San Antonio Rock and Roll Half Marathon earlier this month.

“It’s a disease that many people aren’t aware of and when children do get it, it’s just a horrible disease and a fatal disease,” Rozas said of what moved her to make the commitment. “It just touched my heart thinking that there is not very much information out there for people who do have it, not much support for research.”

They’ve been in training for most of 2009, having run their first half-marathon along with five other friends in April. They do a professional group run once a week, a long run with just the three of them once a week, and several shorter training runs, taking each one as an opportunity to spread awareness.

“It’s also been interesting to have people stop us when we’re in our running shirts and say, ‘What’s Battens?’ and be able to refer them to the (Beyond Batten) Web site,” Ehlinger said.

With the bevy of awareness and fundraising methods out there, Ehlinger said they picked running for the challenge.

“Because it’s so hard and because it kind of takes you out of your own comfort,” she said. “I can easily go run four or five miles but to go run 13.1 miles is really hard mentally, physically and also spiritually.”

And it’s thinking of the Bensons that makes it possible and makes it worth it.

“To be hurting and pushing yourself but then all of a sudden to think about her and what she’s going through and what her family’s going through and their incredible attitude and incredible faith – I think, if they can do that, I can push my body another eight miles or seven miles, easily.”

The runs have become a bonding experience for the friends, who have taken on specific rolls in the process.

Chambers pushes the group past walls with her strong and competitive nature; Rozas has become the “steady Eddie,” setting the pace with her unwavering commitment to training; and Ehlinger is the cheerleader, pumping her friends up or sending out a quiet prayer when needed.

To learn more about Batten Disease and how to help, visit www.beyondbatten.org.

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