On Thursday, CNN named Zach Sobiech one of five "extraordinary people" of 2013. Sobiech died of osteosarcoma in May at age 18. He used his experience and musical ability to help find better treatment and a cure.
His song "Clouds" went viral this year, and topped the charts after he died.
"Joy and suffering can go hand in hand," said Zach's mother, Laura Sobiech. "He chose to be happy. He chose that and he fought for it every day."
He was diagnosed with the rare bone cancer when he was 14, according to Zach's page on The Children's Cancer Resarch Fund website. Three years later, the cancer had spread, and Zach was told he was out of treatment options.
"I want to be remembered as a kid who went down fighting and didn't really lose," he said.
He decided to live the rest of his life fully and somewhat publicly, with the hope that proceeds from his music and other events would help fund better treatments for osteosarcoma, and eventually a cure.
The Pioneer Press reports that money from Zach Sobiech's Osteosarcoma Fund is already working to find a cure. It has raised $667,000 to date.
A multi-phase, interdisciplinary research project at the University of Minnesota has pediatric oncologists, geneticists, cell biologists and epidemiologist combining their expertise to focus on a cure.
The team includes veterinarians because osteosarcoma is relatively common in dogs, with about 8,000 new cases diagnosed each year in the United States.
The research team is comparing the DNA of humans who have osteosarcoma to that of dogs who also suffer from the disease. A dog's shorter lifespan offers a compressed time frame to view the results of the research and therapies, said Logan Spector, the epidemiologist who is mapping the osteosarcoma risk genes.
In one clinical trial, doctors are treating their canine cancer patients with genetically engineered salmonella.
Because of their shorter life spans, "we could test agents on dogs and get to answers much faster than we would with humans," Logan said.
Veterinarian Jaime Modiano said, "We're trying to piece out the genetic components of risk and the genetic components that make tumors behave more or less badly."
Spector said he and the other team members had been working on different pieces of the puzzle and knew of each other's work but hadn't been brought together formally until the Sobiech research grant.
"It's a remarkable coincidence," he said. "Zach could have been a patient anywhere. That he was a patient here, where we have this collection of talent and people who think about osteosarcoma and who can take the legacy that he has created and turn it into lasting information about treatment and risk prevention, is a wonderful thing."
"We never, ever could have conceived of the amount of money that has come in and is continuing to come in," said Brenda Weigel, the pediatric oncologist who heads the team. "It's phenomenal. Zach desperately wanted to make a difference. He wanted whatever money that was raised ... to go to research for a cure."
The research team plans to use its findings over the next two years to apply for a major National Institutes of Health program grant to continue its work.
"Clouds" is still raising money to cure cancer. Interest has moved overseas since a documentary about Zach was translated into 21 languages.
On Dec. 6, an estimated 5,000 people gathered at the Mall of America to sing "Clouds" as part of a KS95 benefit.
Zach's mother, Laura Sobiech, said that performance was “was incredibly moving” and “such a fitting tribute to Zach and his song and his legacy.”