Beyond Batten Launches ‘Be A Hero’ Campaign To Help Battle Fatal Disease

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Making friends has never been a problem for 12-year-old Garland Benson, but this seventh-grader has his work cut out for him as he strives to find 100,000 new pals. He’s determined, though, because he is doing it all for his 15-year-old sister, Christiane, who suffers from a rare disease that has left her blind and suffering from seizures.

The goal of Garland’s 'Be A Hero' campaign is to get 100,000 people to donate $10 each for a total of $1 million. “I think we can easily do that,” Garland says.

Making friends has never been a problem for 12-year-old Garland Benson, but this seventh-grader has his work cut out for him as he strives to find 100,000 new pals. He’s determined, though, because he is doing it all for his 15-year-old sister, Christiane, who suffers from a rare disease that has left her blind and suffering from seizures.

Garland is heading up the “Be A Hero” campaign, a fund-raising effort launched by the Beyond Batten Disease Foundation, a non-profit organization that is working to find a cure for juvenile Batten disease, a neurological disorder.

Children with the incurable disease suffer progressive vision loss, commonly followed within a couple of years by seizures and, as time passes, the loss of motor functions and speech. That’s followed by premature death, usually in the late teens or early 20s. The goal of Garland’s “Be A Hero” campaign is to get 100,000 people to donate $10 each for a total of $1 million.

“I think we can easily do that,” Garland says.

The money is needed to help hurry along research by getting it through an expensive validation and development process so that it can receive FDA approval for clinical trials. The research involves a treatment that could slow down the disease’s progress, perhaps buying time for young people like Christiane until a cure is found. The $1 million Garland is trying to raise will be added to another $5 million the foundation is collecting to fund the research.

Those who want to donate can text the word HERO to 501501 and $10 will be added to their next cell phone bill. Donations can also be made through Garland’s donor page (https://beyondbatten.org/be-project/be-a-hero/) on the Beyond Batten Disease Foundation’s website.

“I think it would be amazing if we find a cure,” Garland says.

The Beyond Batten Disease Foundation was started in 2008 by Craig and Charlotte Benson, the parents of Garland and Christiane. Although Batten is genetic, and families can have more than one child with the disease, Garland does not have it. He’s not a carrier either, so he can’t pass it on to his children.
Despite the disease, Christiane is a cheerleader, has joined her family on ski trips and on horseback-riding adventures, and continues to be an inspiration for her younger brother.

“It’s really cool how she can do all that stuff and not be able to see,” Garland says. “But what I’d really like is for her to be able to lead a normal life like me.”

About The Beyond Batten Disease Foundation
The Beyond Batten Disease Foundation (https://beyondbatten.org/) was launched in 2008 by Craig and Charlotte Benson, whose daughter, Christiane, has juvenile Batten disease. The non-profit foundation’s goal is to help eradicate the disease by raising awareness about Batten and funding research for a cure. As part of that effort, the foundation is trying to raise $6 million to advance an important medical breakthrough that slows the disease’s progress. The money is needed to get the research through an expensive validation and development process so that it can receive FDA approval for clinical trials.

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Cathy Hayes
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