Mitch Ahlschwede began writing letters to Nebraska legislators in 2013 when his daughter, Leyna, was in treatment for neuroblastoma, the Omaha World-Herald reported . Leyna was 18 months old when she was diagnosed, and Ahlschwede recalled feeling frustrated and angry.
Ahlschwede’s letters spurred the Nebraska Legislature to approve $1.8 million to bolster pediatric cancer in the state. Lawmakers put more funding in the state’s budget a year later, designating money to hire pediatric brain cancer specialists to study the disease. Over four years, the state has committed about $7.2 million to the effort.
The state’s funding contribution also grew out of concern about statistics indicating an elevated incidence of pediatric cancer in Nebraska.
“I think it’s a very rare opportunity,” said Dr. Don Coulter, director of the Pediatric Cancer Research Group and an associate professor of pediatrics at the University of Nebraska Medical Center. “I don’t know of too many states that are supporting research for their kids like the State of Nebraska.”
Coulter said state funding, coupled with help from philanthropic groups, has helped consolidate research across the university and expand on it.
The state has funded studies examining the incidence of pediatric cancer in the state, compared to the national rate. Other studies are exploring how to repurpose existing drugs to treat kids’ tumors and develop new therapies.
Coulter said it’s also important to improve access to care for children in Nebraska, where specialized treatment is concentrated on the eastern border. Many families have to travel for treatment.
“We cure 80 percent of the kids that we see,” Coulter said. “But 75 percent of those cured children are going to need consistent care for chronic medical problems for the rest of their lives.”
Ahlschwede said he hopes that the research program will lead to more lives saved, less-painful treatments and fewer children having to travel thousands of miles for treatment.