At first, the fund was a desperate pitch for money to find help for James. "If sharing the story got us more money and more awareness then that was a chance to save my son's life," says Syd. The family held their first fund-raiser in March 2001 at their Baptist church in Peterborough, where Syd is the choirmaster. The five Birrells -- Syd, Pam, James, and his two siblings, Rebecca, then 9, and Ben, 5 -- took the stage to the applause of a crowd of 400, mostly friends, colleagues and neighbours. Syd told stories about James on his good days -- how he loved to catch frogs and play with his best friend, Cam. And he shared some of the horrors of managing the pain on the bad days. That night they raised $30,000.
But even though the first donations got fast tracked into research within months -- Reilly got one of the first grants -- the frantic efforts came too late. After a terrible month of grinding pain, James died at home a week before Christmas. In spite of their grief -- or perhaps because of it -- Syd and Pam kept raising money for research.
James's legacy
Now, four years later, James's legacy -- the James Fund for Research into Neuroblastoma, operated through the HSC Foundation in Toronto -- has raised almost $700,000, which makes it the largest research initiative into neuroblastoma in the country. American actor Tom Hanks is the fund's patron.
No one wants to suggest that because of the James Fund a drop in the death rate is just around the corner, but there has been some clear progress. Recently, for example, the cancer stem cell responsible for neuroblastoma tumours was isolated. Based on that work, senior scientist David Kaplan, who heads the cancer research program at HSC, plans to test existing drugs to see if they will kill those stem cells. "If we find an existing drug that works, maybe we can use it on patients soon," he says.
A researcher makes curing neuroblastoma her life's mission
Risa Torkin, a post-doctoral fellow working with Kaplan, is another scientist who was profoundly touched by James's story. She remembers thinking when the little boy died that "we just didn't work fast enough." At the time, she was studying the disease as part of her doctoral thesis and had no intention of continuing on after she graduated.
But that all changed shortly after James died. She was at a meeting where Syd and Pam were to distribute grant money from the fund. The couple, their grief still clear on their faces, asked the assembled scientists about their research. They also talked about their son and his own course of treatment. "I don't want to sound corny, but it was a very profound moment," she says. "To see these parents sitting there asking questions, knowing that any advances could never help their son. They were so brave. It was unbelievable to me, and so inspiring. I knew then that I couldn't change my focus."
His memory as inspiration
Today, with funding from the James Fund, Torkin is a post-doctoral fellow working both for David Kaplan and a former colleague of his, Barbara Hempstead, who heads up a major research lab at Cornell University in New York City. Torkin is studying a protein that may encourage neuroblastoma cells to metastasize -- identifying this protein is a major first step in finding ways to stop it in its tracks. Her American colleagues are impressed by the support she gets from the James Fund founders. "On bad days when nothing is working out, I remember that someone really cares about the work and we might be helping the greater good later," she says.
