KANSAS CITY, Mo. — Just 4% of the federal government's annual cancer research budget is dedicated to childhood cancer research, according to the Pediatric Cancer Research Foundation.
Parents told KSHB 41 reporter Abby Dodge this gap in funding is “cruel torture” when they make medical decisions for their kids.
In December 2016, doctors diagnosed Emery Smith with neuroblastoma. She died almost exactly one year later.
“She had a smile that everybody to this day still talks about because she would wrinkle her nose up when she smiled. It was so bright,” said Emery’s mother Jenna Smith. “Cancer just stole that from us. It stole her future. It stole our future.”
In her absence, Emery’s family established the Emery Memory Foundation to support other families facing neuroblastoma diagnosis.
“Just to even take a tiny bit of stress off those families. I always wish we could do more because it feels like we just can’t do enough,” Smith said. “We want to change lives. We just don’t want to be a tiny part. We want to be a big part of their lives.”
With a mission to make a change in funding for childhood cancer research, Emery’s Thunder Ride was established.
By the end of September, Emery’s great-uncle, Peter Halper, plans to ride 9,000 miles in her honor to raise money for childhood cancer research and to help financially support families in need.
Halper outlined a ride that will cross the United States three times, one pass for each year of Emery’s life.
He said the connections he has made along the way fuel his ride.
“You can just tell when they are connecting and being motivated and thinking, 'Maybe I can do something to help.' I like that connection, that heart-to-heart connection,” Halper said. “I’m not a doctor. If I were, I would be doing research. I am not a wealthy businessman. If I was, I would be doing that. I can use my bike and my feet to raise awareness and hopefully inspire people to give.”
To make a donation to Emery’s Memory Foundation, you can visit their website or text EMERY to 53555.
