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NEWSROOM:Combating a disease

FROM THE

May 02, 2007|By TONY DODERO

Last week, my boss asked me to tag along with him for lunch at our favorite spot, the Yardhouse.

He was planning to meet with Debra Miller, a Newport Beach woman who had started the organization CureDuchenne Muscular Dystrophy, www.cureduchenne.org, to discuss news coverage of her group and its events.

Not one to turn down a free lunch, I agreed.

I'm sure glad I did.

Miller told us her story about how she founded the organization, and it was both heartbreaking and inspirational.

Her son was diagnosed with Duchenne muscular dystrophy in 2002 at the age of 4. It's a debilitating disease that some 20,000 children, mostly boys, are born with each year.

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The boys' prognosis is not good, but Miller is seeking to change that.

After her son's diagnosis came in, she went to work to find out more about the disease and how she can combat it.

What she found is that most organizations weren't created so much to cure the disease but to comfort those afflicted by it.

CureDuchenne has changed all of that.

"We felt there were other organizations that did a good job supporting parents," she said, but that was the old way of thinking. "Now fast-forward to 2007. They can see the enemy. They know what to do to conquer it. They are that close to be able to save this generation of boys."

Under Miller's guidance, she has been able to donate some $2 million toward research into the disease and its cause, sending off a huge donation recently to Dr. Giulio Cossu in Italy, who is making great strides there in stem cell research.

Surprisingly, Miller said it wouldn't really take a huge amount of money to fund the research that could wipe out what she calls the "No. 1 most lethal childhood disease."

"It's not $100 million," she said. "The research I'm looking at that would have an impact is only $3 million to $5 million."

She told us another story at lunch that day about some young kids who are trying to help with that research.

A young Corona del Mar High student named Leila Pozin heard about Miller's son and wanted to help.

For her bat mitzvah, Leila staged a soccer tournament and fundraiser that in its first year raised $8,000. Last year she raised another $10,000 and this Sunday she and her friend Charlotte Gadbois, a Harbor Day School student, are holding the third annual Kids Helping Kids event at Sage Hill School.

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