As people across campus begin pairing up and raising funds for Dance Marathon, beneficiary Friends for Steven has people asking one question: Who is Steven?
Steven Newkirk was 5 years old in 1997 when doctors diagnosed him with neuroblastoma, a form of pediatric cancer.
“Steven was very bright,” said his mother, Beth Newkirk. “He loved to read, he loved computers, and sports was his No. 1 favorite.”
Steven, who collected sports memorabilia and Pez dispensers, started reading the sports section of the newspaper when he was 4 1/2. The Bulls were his favorite team, and he went to games or stayed up late watching them on television whenever he could.
The boy, whose favorite meal was his grandmother’s matzo ball soup, was very close to his entire family. He would call his other grandmother to discuss the Cubs game, and he and his older sister, Erin, were inseparable. Steven also had big plans to teach his little brother, Grant, how to play baseball, basketball and video games on the Nintendo 64 that the neighbors had pitched in to buy for him.
But Grant was only 2 when his big brother died in 1999 of complications from the cancer treatment. The Chicago-based organization founded in Steven’s name in 1997 raises money for research to find new treatments for neuroblastoma and to increase understanding of it.
“When he was diagnosed, there wasn’t much being done for fund raising for pediatric cancer,” Newkirk said. “We started (Friends for Steven) because we felt we had to do something.”
Based in the Newkirks’ basement, the organization is staffed entirely by volunteers. The executive committee comprises eight families, including the Newkirks and the family of Scott Sagerman, Weinberg ’85.
The Sagermans and the Newkirks both live in Buffalo Grove, but did not know each other until after the Sagermans’ son, Daniel, was diagnosed with neuroblastoma.
Like Steven, Daniel received treatment at Children’s Memorial Hospital in Chicago. Friends for Steven gives the families a chance to repay the doctors at the hospital for their help, Sagerman said.
“When our family got the news about Daniel, Beth offered us advice and helped us get through,” Sagerman said. “Fortunately Daniel is doing well right now.”
The small, family-oriented organization is a change of pace for DM after fund-raising for the much larger Elizabeth Glaser Pediatric AIDS Foundation last year.
In contrast to the foundation, which raises millions of dollars annually, Friends for Steven has raised about $350,000 since 1997. Organizers for DM, which gave $370,591 to the Glaser Foundation, said their donation will make a big difference for Friends for Steven.
“It’s a new challenge for us because it’s taking a new organization and helping establish it,” said David Nacol, DM co-chair and Weinberg junior. “It’s going to give them a boost to move up to that next level.”
Some DM participants have volunteered at Children’s Memorial Hospital and served up food at Friends for Steven’s Hot Dog Day on Oct. 6, and families on the charity’s executive board, including the Newkirks, rode on the DM float in Northwestern’s Homecoming parade.
“Something with Elizabeth Glaser was that they brought a lot of celebrity connections to DM,” said Michelle Madigan, DM co-chair and a Medill senior. “What we didn’t realize is that Friends for Steven brings just as much through family connections.”
The money raised will support research at Children’s Memorial Hospital.
Dr. Howard Katzenstein, a pediatric oncologist at the hospital, specializes in neuroblastoma research and works with Friends for Steven. Two of the goals of the research, he said, are to have a better understanding of how neuroblastoma works and to find better treatments with fewer side effects.
“The whole idea is to find out which genes within a tumor are good and which genes are bad genes that result in the growth of neuroblastoma,” Katzenstein said. “And through research, if you could figure out how to turn off that bad gene, it might result in much easier and less toxic treatment.”
The government supports cancer research but is able to fund only about 20 percent of researchers, Katzenstein said. And because pediatric cancer accounts for only 1 percent of all cancer cases, or about 12,000 cases per year, drug companies don’t view research as financially advantageous, he said.
“We’re always under the gun that if we don’t get funding, we’ll have to close the laboratory and research will stop,” Katzenstein said. “We can’t let that happen because there are too many sick kids depending on us. Philanthropic groups have a huge role in maintaining our ability to do our work.”
Funding is necessary to sustain the laboratory, which he said costs about $500,000 a year. Katzenstein also said he hopes the money raised through DM will help the laboratory purchase a polymerase chain reaction machine, which can help identify cancerous cells in a patient’s body.
Pediatric cancer usually is related to something genetic, as opposed to some adult cancers, which can be related to environmental factors such as smoking or drinking, Katzenstein said. Neuroblastoma typically affects children younger than 5. Children with neuroblastoma are treated with chemotherapy, radiation, surgery and bone marrow transplants.
While pediatric cancer does not account for a large number of cases, he said, funding research is worthwhile.
“If you’re able to save someone who’s less than 1 year old, and that person lives to be 80, then you have saved 80 years by saving that one person,” Katzenstein said. “The amount of impact you have made is enormous because you have the chance to affect generations.”
Katzenstein was more than just another doctor for Steven. Katzenstein would tell the boy jokes to cheer him up, even comparing Steven’s puke to colors of ice cream.
And Steven once played a joke on Katzenstein. When Steven was in the hospital on his 8th birthday, Katzenstein walked into Steven’s room and started singing “Happy Birthday.” Steven pressed the nurse call button, broadcasting Katzenstein’s singing through the hall.
“The nurses applauded when (Katzenstein) walked out,” Beth Newkirk said. “Steven totally wanted to embarrass him.”
