12-year-old Spearheading $1 Million Research Fund-raiser for Sister with Batten Disease

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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The Beyond Batten Disease Foundation has started a Be A Hero campaign to raise $1 million and public awareness about the form of the disease that strikes youngsters.

Craig and Charlotte Benson founded the organization in 2008 after doctors diagnosed their then-6-year-old daughter Christiane with juvenile Batten disease. Now 15, Christiane has lost her sight to the neurological condition.

One of the foundation’s goals is to raise $6 million for clinical trials of a potential medical breakthrough for juvenile Batten — a therapy that researchers believe could slow the progress of the disease.

The funds will cover the expensive validation process that the government requires for a potential therapy. These are steps a therapy developer must take before the U.S. Food and Drug Administration allows it to start clinical trials of its potential treatment.

Christiane’s brother Garland, 12, has taken on the challenge of raising $1 million of the $6 million needed to validate the new therapy candidate.

He will do this by finding 100,000 new friends for his sister — people who are willing to chip in $10 each to help her and other youngsters with the disease. Garland is capable of pulling it off, since making friends has never been a problem for him.

“I think we can easily do that,” he said in a press release.

After the Be A Hero funds are raised, the foundation will still need $5 million for the validation effort.

Those who want to donate to the Be a Hero campaign can text the word HERO to 501501. The message will trigger a $10 donation, which donors will see on their next cellphone bill. You can also donate online here.

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

His sister inspires him, he added. She is a cheerleader and takes part in family ski trips and horseback-riding adventures.

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

Although Batten is genetic, Garland didn’t get it. He is not a carrier either, so he won’t pass it on to his children. Learn more about the condition at Batten Disease News.