News & Events
11/27/17
Children's Cancer Charity Shines Light on Underfunded Research on #GivingTuesday

This year on #GivingTuesday, a grassroots pediatric cancer charity is shining a light on the grossly inadequate and unequal funding that childhood cancer research receives from the federal government and private organizations compared to the study of adult cancers.  The Children's Neuroblastoma Cancer Foundation (CNCF), founded in 2000 by the parents of a child who succumbed to the disease, has released a video that shows families and neuroblastoma survivors sharing in heart wrenching detail their battle with the aggressive childhood cancer, as well as the lingering after-effects.
 
"I only sweat on one side of myself and half of my liver is already cirrhosed," said 22-year-old Johnny Losurdo, who was diagnosed with neuroblastoma at just 4 weeks old. Each of the families featured in the video have dealt with a diagnosis of Stage 4 neuroblastoma, a solid tumor cancer that is more common in infants than leukemia, yet receives not even a fraction of the research dollars.

Neuroblastoma has been called "the great masquerader" because it mimics common childhood illnesses. It originates from immature nerve cells and manifests as a solid tumor most commonly in the adrenal glands above the kidney and in nerve tissues in the neck, chest, abdomen or pelvis. Its primary victims are under age 5, with an average age of 2 at diagnosis. Survival rates for patients in advanced stages of disease range from 40 to 50 percent, and there is a high rate of relapse.  
 
Survival rates have improved, albeit slowly, thanks in large part to the efforts of grassroots charities like CNCF, supported mainly by neuroblastoma families and their private networks who raise money via lanyard and bake sales, golf outings and holiday appeals. Even the patients, themselves, have helped out. One, Arianna Dougan, 11, who recently succumbed to the disease, raised $3,000 this year selling wristbands she designed at a St. Louis Blues hockey game. Ari had met Blues player Vladimir Tarasenko at a Hockey vs. Cancer night a couple of years ago. The Blues organization made a generous donation to her cause.
 
CNCF has contributed nearly $2.5 million to fund neuroblastoma research. In the U.S., the majority of cancer research dollars go to fight cancers most commonly found in adults. For instance, less than 3 percent of the American Cancer Society's funding is designated for childhood cancer research.
 
"If there was a killer on the loose threatening the lives of children, we would do everything we could to stop that person. Cancer kills more children each year than guns. But when it comes to lesser-known pediatric cancers, we put the onus on families to find a way to beat it. That's not the way it should be," said Pat Tallungan, the co-founder and president of CNCF. Her son, Nick, lost his battle with neuroblastoma at age 10. "We hope to unite the nation to fight with us and donate on this #GivingTuesday so that kids with neuroblastoma will have a fighting chance."