Kansas City nonprofit having big impact on childhood cancer research
OLATHE, Kan. — A Johnson County mother hopes that her nonprofit can lead to more research into pediatric cancer.
Braden's Hope For Childhood Cancer is already having a big impact in that area.
Started by Deliece Hofen in 2010, the nonprofit has raised millions of dollars to fund more research studies. The organization is named after her now 20-year-old son, Braden Hofen.
"When Braden was three, he was diagnosed with a cancer called neuroblastoma and given a 30% chance of survival," Hofen said.
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After undergoing treatment for a year-and-a-half, he relapsed at five years old. Doctors told Braden's parents there wasn't a cure. At that same time, Deliece was diagnosed with Stage 2 breast cancer.
"I had all of these treatments available for me and there was nothing available for him," Hofen said.
That's when she learned all childhood cancers get less than 4% of the National Cancer Institute's budget. Breast cancer gets 12% which is why she had more options. That spurred her to start what's now known in the Kansas City area as Braden's Hope.
"Our very first gala," said Hofen, "we raised about $60,000. We were so excited, and last year we raised over $1 million at our gala."
That money is used to fund childhood cancer research, most of which is happening at Children's Mercy and the KU Cancer Center.
One study they've backed has moved into a Phase 1 study with kids enrolled in it.
"About 1 out of a 1,000 research studies makes it to a Phase 1 trial, so it's a big deal to be there," Hofen said.
Additionally, another study they've backed has received significant funding from the National Institutes of Health for continued work to eventually move into a trial.
Braden still has residual health issues caused by the after-effects of the treatments used to save his life more than a decade ago. That, combined with the toxicity of the chemotherapy, led to him getting a secondary form of leukemia when he was eight years old.
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His brother ultimately saved his life when he turned out to be a match for a much-needed bone marrow transplant. Hofen said the treatments used to save her son's life also knocked out one of the chromosomes in his DNA.
"How toxic is that, right? And this is the stuff that's supposed to save your life," Hofen said.
She added that 99% of kids who go through treatments have lifelong health effects, like organ damage and secondary cancers. Since her son underwent his cancer treatment in 2007, doctors have been able to perform more targeted therapy but the drugs they use to treat those cancers are the same chemotherapy drugs that have been used for the last 50+ years.
"I would hope in the next 20 years that pediatric cancer patients would have the opportunity to have therapies that are far less toxic to them so when they're done with their treatments and they survive their cancers, they don't have lifelong health effects," Hofen said.
Braden remains in remission for both of his cancers and continues to defy the odds.
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Braden's Hope is holding its annual Hope Gala next weekend in Overland Park. Tickets are closed but volunteers are always needed for their year-round events.
