Heroes Among Us — Concord resident makes it personal, raising $200,000 for lupus

CONCORD, CA (Sept. 17, 2024) — Every year, Arnetta Jones transforms her yard in the quaint Sun Terrace neighborhood into a bustling fish fry, where neighbors line up to get a taste of delicacies such as fried catfish.

But this isn’t just any fish fry – each plate served helps fund critical research in finding the cure for lupus. This local hero is transforming the conversation of lupus awareness, one step at a time.

Since 2011, Jones has raised about $200,000 for the Lupus Foundation of America with her fish fries and participating in the Walk to End Lupus Now through her Team PCPMJ. She named the team after her two daughters, Phylicia C. and Jevonya M. Jones, who have both died from the disease.

“It’s when I go to some lupus events and I see people who have really been debilitated by this disease, and yet, they have made their way back,” Jones said. “Someone was literally in a wheelchair, she could not walk, that’s how lupus had affected her. And now, here she is: standing on her own two feet. I just wanted to be there to encourage them, and say, ‘Good job,’ because that could not have been easy, I know it.”

A family in crisis

For the Walk to End Lupus Now, volunteers organize teams who compete to see who can raise the largest amount of money after attending a walking marathon event. The event is held two times a year in Los Angeles and San Francisco, with the next one in San Francisco on Oct. 13.

Jones first attended the walk in 2011, when her oldest daughter Jevonya had died of lupus.

“One of the things about lupus is you have these things called flare-ups,” Jones said. “But for my oldest daughter, she never had a flare-up, and when a flare-up was coming on, she did not recognize it. So I don’t think she realized what was going on and from one step to the next, she wasn’t feeling well, having trouble breathing, and she was picked up by an ambulance, taken to the hospital.”

Phylicia had discovered the Lupus Foundation, and the family decided to create Team PCJMJ to raise awareness for lupus in their community. Phylicia died in 2022, but Jones keeps going.

“She continues to fight for other people by putting on this fundraiser so she can educate people,” said Carlyn Obringer, a long-time friend of Jones and volunteer for the fish fries. “It’s a delicious fundraiser, but it’s also how Arnetta’s trying to help make an impact so that other people don’t lose their children in the same way.”

Many questions remain about lupus

As Jones describes it, lupus is an autoimmune disease where “the body begins to attack itself.” The disease is incredibly ambiguous. Although the cause is unknown, it is suspected to be a genetic disease.

In milder cases, lupus is characterized by occasional body aches. However, many patients experience a flare-up, where the disease attacks mobility, kidney function and lung function.

“For my oldest daughter, it was her lungs, and then it went to her kidneys, and basically all of her organs were beginning to fail,” Jones said.

Helping the underserved

Jones chose to make her fundraiser a fish fry because she knew it would be successful in her community.

“Within the Black community, a fish fry is a big deal. Everybody gets together,” Jones said.

The fish fry has been Team PCJMJ’s most popular and prolific event, making Jones one of the top donors to the Lupus Foundation on the West Coast.

Jones is also vocal about lupus in her community church and continues to help others through her job teaching underprivileged children at Mount Diablo High School.

“I don’t know what it feels like to go without a meal, but some of our students have,” said Jones. “I mean, they have gotten themselves up, got themselves together, got themselves to school and succeeded.”

Jones aspires to make an impact in her community and support those who persevere in difficult circumstances, and, ultimately, “pay it forward.”

“You can always do something for someone else,” Jones concluded.

For more information, visit https://support.lupus.org/site/TR/WTELN/General?px=1191205&pg=personal&fr_id=2043.