Lainie Jones believed in the power of being early.
She credited early detection as the reason she survived six different types of cancer—and it became the driving force behind her lifelong advocacy for early detection research and support for others facing cancer. Jones, who suffered from Li-Fraumeni syndrome — a rare genetic condition that made her prone to multiple cancers — shared her journey with her Instagram followers around the world, encouraging them to do self-checks and stay current with doctor visits.
Her first battle with cancer was when she was only 18 months old. Jones died Oct. 14 at her Fort Lauderdale home with her husband, Joseph “JJ” Jones, by her side at 41.
Jones’ father, Jeff Schultz, 74, said it was her advocacy that kept her going. “She really enjoyed being a mentor to people who had cancer,” he said, recalling one young woman who called herself one of Jones’ “mutant buddies” at her Thursday funeral in reference to their shared Li-Fraumeni diagnosis.
Her optimism and candor reached far beyond her social media. Jones thrived in her work with the American Cancer Society, where she worked for the Hope Lodge in New York City, and later joined the organization’s events department and helped lead its gala. “She was infectious,” friend and former colleague at the American Cancer Society, Lorraine Katt, 52, said. “People just wanted to be around her.”
Congresswoman Debbie Wasserman Schultz first met Jones in 2009 at a Sharsheret Walk in Boca Raton and was immediately “enveloped by her light and energy and her ferocity.” The two went on to work together over the years to raise awareness, funds and legislation for cancer research and early detection.
Lainie Jones and Congresswoman Debbie Wasserman Schultz.
“She was all gas, no quit,” Wasserman Schultz said. “She had every reason to really only think about herself, but instead thought about everybody else but herself.”
Even after enduring brutal treatments for brain cancer, Jones insisted on speaking at Wasserman Schultz’s annual Cancer Survivorship Summit last month. “She was so determined to be able to be at that summit and deliver her message,” the congresswoman said.
Her last message to her Instagram followers showed her commitment to funding research for cancer treatment.
“I’ve faced seven primary cancers, gone through multiple treatments, and I’m still thriving,” she wrote in one of her final Instagram posts. “Research doesn’t just matter — it saves lives.”
‘Live every day like it’s your first’
Schultz remembers his daughter as “the center of attention” from the moment she was born. Jones was the middle child in the family, which moved to South Florida when she was around 6.
After her first battle with cancer when she was a toddler, she was eventually declared cancer-free.
But by age 24, she was diagnosed again—this time with breast cancer. By then, Jones had been dating JJ Jones, who she met at the Abercrombie & Fitch store in Boca Raton Town Center in 2004, for a few years.
Doctors told her she’d need a full-time caregiver and might have to move back in with her parents. Unsure what to do, she called JJ Jones. He knew exactly what to do—he packed up his place in Boynton Beach and moved in to care for her.
Lainie Jones and her husband, Joseph “JJ” Jones.
“Most young men would have bolted,” Schultz said of his son-in-law. “He has been with her through anything and everything that she’s gone through.”
JJ Jones proposed to Jones on April Fool’s Day at her favorite place—Disney World—because she loved how magical and happy it felt. They were married on March 3, 2012.
Over the years, she would face breast cancer, thyroid cancer, melanoma, sarcoma, adrenal carcinoma, non-smoker’s lung cancer and finally glioblastoma.
But JJ Jones said that his wife never lived her life in fear and instead chose to “live everyday like it’s your first.”
Optimism never dimmed
Jones was also a devoted fashionista, always ahead of the latest trends, her husband said.
Her sense of style is what Katt, her friend and colleague, first noticed when Jones came in for an interview at the American Cancer Society’s Hope Lodge in New York City in 2015.
“I remember seeing her walk out of the elevator in a bright pink blazer and thinking, oh boy, who’s this? She’s definitely Florida,” Katt said from New York City.
Katt, now the lodge’s general manager, said she immediately told her boss, “If we don’t grab her, this will be such a big mistake.” The two quickly became close friends.
Lainie Jones and Lorraine Katt
Jones thrived at the American Cancer Society, and she later would thrive as an advocate on social media through her Instagram account, @theearlydetective. She encouraged followers to do self-checks and stay up to date with doctor visits. Her husband said she would light up whenever someone messaged to say her posts helped them catch cancer early.
Katt last spoke to Jones on Sept. 30, to tell her she was dedicating a 180-mile fundraising hike in Spain to her. “You guys are wonderful, and I love you,” Katt said Jones told her during their final conversation.
Even after multiple diagnoses, her optimism never dimmed. “She would always say, ‘What’s the alternative—be negative? That’s not me,” Katt said.
Lainie Jones
Those who knew and loved Jones knew she would want to be remembered as a warrior, with her husband also describing her as a rainbow—always colorful and bright. Lainie Jones is survived by her husband JJ, her father Jeff and mother Kathy Schultz, and her brothers Brian and Joey Schultz.