Our mission is “to inspire change by sharing the unfolding story of our search to find a cure for neuroblastoma by raising funds while supporting families.”
The James Fund was started by one family desperate to save their child but has since turned into a movement and funding model that is emulated and celebrated around the world.
When the Birrell family learned that there was little research in the field of neuroblastoma, the deadly cancer little James was battling, they decided to do something about it. Research is largely funded by drug companies. It takes billions of dollars to fund the research into new drugs, meaning a company needs to know the drug can make billions of dollars in order to justify that kind of investment.
Neuroblastoma is one of the most fatal forms of childhood cancers. It is also one of the most common. But the incidence of childhood cancer in general and neuroblastoma specifically is statistically small, much smaller than it is for adult cancers like breast and prostate. Essentially, there are profits to be made in common adult cancers, and no profits to made in childhood cancers. So they don’t get funded, or they get very little. Pharmaceutical companies are, afterall, businesses.
Try explaining that, though, to a seven year old boy like James who was determined to fight the cancer that ravaged his body. He didn’t like that answer and neither did his family. So James’ dad Syd talked to the researchers and asked them how much it would take for the family to “buy” a researcher. It’s nothing they’d been asked before, so they threw out a number, and probably didn’t think too much about it.
But the Birrells did. They sat around their kitchen table with a bunch of friends and organized a fundraiser that netted $30,000. Syd reconnected with the lab and said: “Here’s the money. Introduce me to my researcher.”
And the James Fund was born.
From that desperate, humble beginning, The James Fund has grown into the largest fund for neuroblastoma research in the world, having brought in over $12,000,000, having taken the top prize for research in the field, and having established a blueprint that is now copied by countless family funds all over the planet.
$12,000,000 is not enough to fund research into new drugs. But it is enough to fund research into combinations of existing, approved drugs. And it is enough to fund outside the box thinking that has lead to some of the most significant break throughs in the field. Different drug combinations are showing promise in treating children, and one of our researcher team made a discovery that literally changed the game.
Drs. David Kaplan and Loen Hansford had an offbeat theory. While all research assumed that all neuroblastoma cells were much the same, they decided to explore the possibility that there was one cell that controlled the others – a kind of queen bee cell that ordered the worker bee cells around.
It turns out they were right. And that single discovery, funded by The James Fund, has rocked the cancer world in all the right ways.
The James Fund realizes however that the experience of fighting childhood cancer goes well beyond research, and so parents who have been down the road before gather under this umbrella to offer advice, hope, experience and a hand when and as needed to families just getting on the path or walking through a particularly difficult patch.
Neuroblastoma takes a terrible toll well beyond the immediate child and family. When a child dies from it, whole communities suffer. Childhood friends suffer terribly and the rate of sibbling suicide is staggeringly high. Many families lose their homes, their jobs and even each other. We share what we have learned from the process to help others avoid the all too common pitfalls of battling something so terrible and enormous.
The James Fund does not invest in much infrastructure – just enough to keep the doors open and the lights on. Our goal is to put ourselves out of business by ending the terrible scourge of neuroblastoma. We aren’t here to build careers for ourselves or to pay our mortgages out of the money you donate. All we want is to end this terrible disease and prevent it from hitting anyone else’s beloved children, neices, nephews, Godchildren and Grandchildren, including yours.
And here’s the irony. Research into adult cancers doesn’t help kids. But research into childhood cancers helps everyone. Why? Most adult cancers are either caused or impacted by lifestyle – things like polution, smoking, drinking, diet and physical inactivity are high on the list. It’s often harder in an adult body to see where one disease or environmental impact ends and the cancer starts.
A child, on the other hand, is relatively untouched by those environmental impacts, making it much easier to just research the cancer alone. So the best investment of your hard earned money to fight adult cancers might in fact be a donation to a childhood cancer cause.
If you are a neuroblastoma family and need support, please click here and know we will stand with you however we can.
If you can help us put an end to the terrible scourge of one of the most deadly of childhood cancers, please click here. With what our scientists are learning about cancer in general, the life you save may even be your own. Seriously.