From great loss, a promise: Son’s death inspires Barrington couple’s foundation

Nearly 25 years ago, Ann and Jim Pride endured the unimaginable when their son Jeff — a happy boy who liked the color blue and counted Dav Pilkey’s “Captain Underpants” series among his favorite books — died following a two-year battle with acute lymphoblastic leukemia.

He was three days past his seventh birthday.

“He loved building things and models,” Ann Pride recalled. “He thought he wanted to be an architect.”

Some months after his death, neighbors Jim and Karen Powell along with Phil and Jan Fijal — who “held Jeff as a newborn and held him after he took his last breath” — approached Jim and Ann about establishing a foundation in Jeff’s name that could help save other children.

“Ann and I were devastated. We didn’t have the energy to start a foundation,” said Dr. Jim Pride, an Arlington Heights internist.

But with the Powells and the Fijals, the Barrington couple cofounded the Jeffrey Pride Foundation for Pediatric Cancer Research in 2000. A gala fundraiser marking the upcoming 25th anniversary is Nov. 9 in Palatine.

“We just want to see an end to suffering and a cure for the disease,” said Ann Pride.

To date, the Jeffrey Pride Foundation has raised more than $5 million. Those millions have helped save lives, said Dr. Doug Hawkins, the foundation’s medical director and chairman of the Children’s Oncology Group, which the foundation supports.

Established in 1995, the COG encompasses more than 200 children’s hospitals, universities and cancer centers across North America, Europe and Australia. The largest international organization devoted to childhood and adolescent cancer research, the COG is partially funded by philanthropic organizations such as the Jeffrey Pride Foundation.

Between 80% and 90% of pediatric cancer patients are treated at COG institutions, according to Hawkins. About 15,000 children (categorized by the National Cancer Institute as people under age 20) are diagnosed with cancer every year, he said.

“Overall, the incidence of childhood cancer has been gradually going up in the United States, not at a very high rate, but it’s gradually going up,” said Hawkins, who is also Professor of Pediatrics at the University of Washington School of Medicine and Seattle Children’s Hospital.

Hawkins says it will take more studies to determine the cause of the slight increase in childhood cancers, including acute lymphoblastic leukemia, known as ALL. The most common of all pediatric cancers, ALL affects between 4,500 and 5,000 young people annually, accounting for about 25% of pediatric cancer patients, Hawkins said.

About 90% of children diagnosed with ALL survive at least five years, said Hawkins, adding that survival rates have dramatically improved.

Among the Jeffrey Pride Foundation’s greatest contributions is the financial support it provides the Children’s Oncology Group’s cancer registry and bio-banking initiative. Known as Project: EveryChild, COG established the initiative in 2015.

“We wanted to have a mechanism to collect a little bit of information on literally every child who has cancer, whether it’s a common cancer like ALL or very rare cancers,” Hawkins said.

Project: EveryChild consists of a repository of tumor tissues, blood samples and other biological information collected from willing patients and made available to researchers around the world. It also helps screen patients who might be eligible for clinical trials at member institutions.

“Since we launched Project: EveryChild, 55,000 children with cancer have enrolled and become part of that registry,” Hawkins said. “We’ve collected 300,000 bio specimens, blood samples, bone marrow samples and tumor samples that have then been made available for dozens of research projects related to pediatric cancers.”

Supported entirely by philanthropy, Project: EveryChild owes its existence to charitable organizations like the Jeffrey Pride Foundation.

“We needed their investment to get this off the ground and their continued investment to allow us to bank all these samples and make this data available,” Hawkins said.

COG clinical trial results prompted the Food and Drug Administration to approve 16 anticancer drugs, many for the treatment of leukemia and one for treatment of Hodgkin lymphoma in children.

Closer to a cure today than they were 20 or 30 years ago, researchers will be even closer in five or 10 years, Hawkins said. The Jeffrey Pride Foundation makes that possible.

“The research they fund will lead to better cures, treatments that are more effective and have fewer long-term side effects,” Hawkins said.

“What we’re doing today will make the future better for kids.”

Cancer denied Jeff Pride his future. But other children will experience theirs thanks to the Jeffrey Pride Foundation.

Working for the foundation. Ann Pride said, “helped us heal from losing him, helped us feel his suffering wasn’t for nothing.”

Jim Pride said they and their fellow volunteers do what other parents cannot. When a child battles cancer, parents “don’t have time to raise money or awareness,” he said. “It’s up to Ann and I to do that.”

<strong id="strong-37eb04a92cd10df6f0efffd55929308f">Jeffrey Pride Foundation for Pediatric Cancer Research winter gala</strong>

When: 6 p.m. Saturday, Nov. 9

Where: The Cotillion Banquets, 360 S. Creekside Drive, Palatine

Tickets: $350 each, $3,000 for a table of 10. jeffreypridefoundation.org/2024-winter-gala.