By Michael Hixon (Updated: Thursday, March 13, 2008 10:25 AM PDT)
Cooper Jones, center, was diagnosed nearly two years ago with Duchenne muscular dystrophy. Pennywise, also pictured, is teaming with Cooper’s parents, Hermosa Beach residents Scott and Cathy to raise awareness about the disease.
In May 2006, Hermosa Beach residents Scott and Cathy Jones were shocked when their 4-year-old son, Cooper, was diagnosed with Duchenne muscular dystrophy, a degenerative muscle disease that strikes during early childhood.
Affecting one out of every 3,500 boys worldwide every year, DMD is the most common, fatal, genetic childhood disorder. Knowing their son faces a disease that is usually fatal by their 20s, the Joneses set out to raise awareness, hoping this will lead to a cure.
“Three different pediatricians never caught it and we hear horror stories of that as well with all the other parents we know,” said Scott. “They’re not looking for it because the kids appear so normal. So it was a complete shock, definitely.”
Scott graduated from Mira Costa in 1983 with Pennywise founders Jason Thirsk and Jim Lindberg. Pennywise was formed in Hermosa Beach in 1988 and has garnered a worldwide punk following. With a new album to be released on Myspace records on March 25, Lindberg felt it was a perfect opportunity to help an old friend raise awareness of a little-known disease.
“I think it’s important to put a face on these diseases and also raise awareness,” Lindberg said. “It’s one thing to raise funds, which obviously we need so much for this cause, but it’s also to raise people’s awareness that we are so close with a lot of these diseases especially with different forms of stem cell research. You have to consider obviously that Congress decides what to do with taxpayer money and a lot of people in this country, on this planet, would rather see money being spent on things like muscular dystrophy than pre-emptive wars and weapons of mass destruction. It’s something I think is really important, something I really want to shine a light on.”
According to the Muscular Dystrophy Association Web site, DMD is one of the nine types of muscular dystrophy. The symptoms include “generalized weakness and muscle wasting, first affecting the muscles of the hips, pelvic area, thighs and shoulders. Calves are often enlarged.” The disease eventually affects all voluntary muscles and the heart and breathing muscles.
Scott said the first signs that something was not right with Cooper was that this “big kid was slow on stairs and a little awkward and clumsy.” Doctors basically told the Joneses not to worry and that “he’ll catch up.”
“Up until that point you don’t really know that your child’s different,” he said. “You look at him right now and there’s nothing wrong with him at all, he looks completely normal.”
When Cooper was diagnosed, the Jones family lived in Dana Point but kept a house in Hermosa Beach. They decided to move back permanently because of the support of their friends and the community.
“Pennywise and all of our friends from the South Bay united in a unbelievable rally mode from running races with us for support,” he said.
With their new Myspace deal and a concert at the Key Club in Hollywood on March 27 (which is already sold out), Pennywise is continuing that support.
“Funds need to be earmarked for this type of research to help these kids out that are going through such a tough time,” Lindberg said. “So we were able to step in with our new Myspace site. We’re going to have a lot of traffic coming through our site so we’re linking to www.cooperscure.org, which is Cooper’s Web page, that directs people on how they can donate or they can find out more about the disease and become involved.” Pennywise’s new album, “Reason to Believe,” will be available at www.myspace.com/pennywise on March 25 and can be downloaded free until April 8. More information about Cooper is available on Pennywise’s site also. Following its March 27 concert, Pennywise heads to Las Vegas for a March 29 concert and then off to Japan and Australia before heading back to California for an appearance at the April 19 Toyota Grand Prix of Long Beach.
Scott recently went to Washington, D.C., with a parent group to lobby Congress for additional funds for research and to put a brighter spotlight on DMD. But the harder part is still ahead as Cooper and his parents continue to battle the disease.
“That’s what’s so hard being a parent because you know it’s coming and you can see them getting fatigued and you can see them not keeping up with friends and things of that nature,” Scott said. “It just breaks your heart.”
Another project on the horizon are Pennywise wristbands, similar to the ones that Lance Armstrong made popular during his cancer fight, that will also publicize the Web site www.cooperscure.org and will soon be on sale.
Question: Manhattan Beach, Hermosa Beach and Redondo Beach were cited as ocean pollutors by the Los Angeles Regional Water Quality Board for storm drain runoff violations and could face possible fines. (See cover story for Redondo Beach, see page 10 for Manhattan Beach and page 12 for Hermosa Beach.) * Several of the cities think they are being unfairly targeted. Do you agree?
* What can the cities and citizens do to keep our beaches and oceans clean?
from Archives: Stepping Out 
