(From left) Cathy, Cooper and Scott Jones. Photo: Scott Jones
By Marina Dundjerski
FIFTEEN YEARS AGO, Cathy and Scott Jones received news that no parent wants to hear: Their 4½-yearold son, Cooper, was diagnosed with Duchenne muscular dystrophy (DMD), a devastating genetic disease that primarily affects boys and leads to a short life expectancy.
“That was an awful day,” Cathy Jones recalls. “But things were a lot different then,” noting that much more is now known about DMD and that Cooper, now 19 years old, is continuing to beat the odds while additional, promising scientific advances are on the horizon.
Early on, Cooper received his medical care at a children’s hospital in the Midwest, where the South Bay couple joined a DMD parent support group and became close to another couple with a son being treated at the same hospital. When that couple — Dr. Stanley Nelson, UCLA professor of human genetics, and Dr. Carrie Miceli, professor of microbiology, immunology and molecular genetics — created a center for DMD at UCLA, the Joneses were thrilled to bring Cooper there for treatment. In 2007, the Center for Duchenne Muscular Dystrophy at UCLA was established, with Drs. Nelson and Miceli and colleague Dr. Melissa Spencer as co-directors.
“They actually really get it and can relate personally to other parents of children with Duchenne,” Scott Jones says. “They have a sense of extreme urgency, like we do. When it’s your kid’s life, it gives you fire under your skin. We are in awe of them. I don’t understand how they can do it — they are probably thinking of this 24/7.”
DMD impairs production of the protein dystrophin, which is required for healthy muscle function. The Center for DMD at UCLA builds collaborations among UCLA scientists and clinicians and aims to improve access and care while advancing leadingedge drug discovery and clinical trials. Funding has come from research grants and private philanthropy. The Jones family, grateful for Cooper’s new clinic, has been helping bring attention and charitable dollars to the center since its start.
Retired international models who later built and sold a medical-records and legal-services company, the Joneses have been responsible for more than $280,000 donated to the center, and they volunteer their time and in-kind support to the center’s annual fundraising events. Over the last three years, they have taken their support to a new level — with Cooper at center stage. In 2019, the Jones family opened their backyard for Cooper Fest, an annual Hawaiian-themed fundraiser that showcases Cooper’s musical talents and songwriting and is supported by South Bay musicians and residents. The July 10, 2021 fest featured performances by Cooper and friends, including Pennywise singer Jim Lindberg (a Bruin who went to high school with Cooper’s father) and a video shout-out to Cooper from Cyndi Lauper. The event raised more than $30,000 for Cooper’s Cure, a charitable organization created by the family that donates all proceeds to UCLA’s Center for DMD.
While Cooper recently began using a wheelchair, he still has use of his arms. He realized his love of music several years ago, and during the COVID- 19 pandemic, he was challenged by his mentor, Lindberg, to write songs and perform them at Cooper Fest. For using music to inspire others, Cooper was awarded the Center for Duchenne Muscular Dystrophy at UCLA’s Meyer- Whalley Instrument of Change Award.
“I’m proud of him that he’s doing this,” Cathy Jones says. “The main thing he wants to show people is that he’s more than his disability — that’s not what defines him at all.”
Cooper is hopeful that new genetic medicine may preserve his muscle strength and allow him to continue playing, and he often quips that he “hopes the science will catch up” to him. He has donated tissue to the UCLA Center for DMD and has been among the most active participants in the center’s research. “It’s been 15 years, and we are so close; we’re really at the edge of the cliff for a possible cure,” says Scott Jones.
Until then, the Jones family will continue to encourage others to donate to the cause. “Every little bit helps,” Cathy Jones says. “Small money helps keep things running while people are writing the big grants. The small money helps get the big money. That’s the bottom line.”
And while Cooper waits for the science to catch up to him, he will be writing and recording new music while attending California State University Long Beach. Says Cooper, “Everyone has been through difficult situations that may have seemed impossible to overcome. It is crucial that you stay strong and stay motivated, you will be surprised to find that nothing can stand in your way.”
Marina Dundjerski is a freelance writer in Los Angeles.
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