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By Robert Bazell NBC News updated 2/23/2005 1:20:52 PM ET
“I just remember sitting by his crib and just crying and crying,” says Portia. “He was slipping away, every minute.”
Like all parents, they wanted to know what to do.
“So, we said, ‘OK. What’s there in medicine?’ There wasn’t anything in medicine,” recalls Jon. “And then we said, ‘Well, they must be doing research.’ But there was no ‘They.’ There just wasn’t.”
Autism had long been neglected. So Portia, an accomplished set designer, and Jon, a successful movie producer, formed a parents’ organization called Cure Autism Now.
When NBC News first visited them in 1999, they were lobbying Congress for money and attention. But more important, Jon and Portia were learning the scientific details so parents could push the research.
Today the organization can share credit for a new blood bank where researchers look for genes that might cause autism. Scientists say the group has brought increasing focus to autism in many labs.
“It has directly changed the scene of autism research in the United States,” says Dr. Michael Merzenich at the University California, San Francisco.
“I’ve never seen more effective parent involvement in any disorder,” agrees Dr. Daniel Geschwind, a genetics researcher at the University of California, Los Angeles.
How does it feel for Jon and Portia to know they can move science and politics like that?
“People told us in the beginning you can’t hurry science,” laughs Portia. “Well, you can. You really can. You can treat it like a low-budget movie and make it go fast. And that’s what we’ve done.”
But of course it is never fast enough. Dov, now 13, remains profoundly affected. And while autism is getting more attention, it still receives far less money than any disorder that affects as many people.
So is Cure Autism Now an ambitious name for their organization?
“It will always be [a] real good idea until it is done,” says Jon. “And then when it’s done, we’ll be happy to retire the name.”