NET cancer problems at every level
Fighting NET cancer is difficult on every level imaginable. For patients, there is the constant round of injections and rising and falling hopes with every doctor’s visit and set of lab results. For primary care doctors there is the difficulty of trying to diagnose a disease you’ve been trained not to look for. For oncologists there is the limited set of treatments and the knowledge that for most patients all you can do is fight a delaying action in the hope a cure will be found before the patient reaches the critical stage where there is nothing left to do but manage the oncoming freight train of death.
Generating $200,000 this year would be another step forward.
For researchers there is the lack of funding for basic research or even–too often–for trials of promising therapies. NET cancer is a zebra–a supposedly rare disease–and that also makes it an orphan when it comes to the priorities of most drug companies and major research facilities.
Moving forward on NET cancer
When my wife Jane died of NET cancer December 10, 2010 I was emotionally, physically, and mentally exhausted. Watching someone you love die–walking them to the end of that road–is like nothing else I have experienced in my life. I don’t know where the strength came from for me anymore than I know where the strength came from for her. I do remember thinking to myself the night before she died that somehow in the previous 28 days I had become an old man–or at least that I was walking like one.
For someone like me, $100,000 is a huge amount of money.
But I was also angry–and determined that I would complete the task we had both set out to do: to kill this disease–not just for Jane, but for everyone. I did not know how much more angry I would get as I began doing the background research I knew would need to be done before I could be of any use to anyone. I did not know how frustrating things would get. I just put my head down and started trying to move forward.
The root of the NET cancer research problem
I pretty quickly learned just how bad the funding and resources problem was–and knew that it was the root of most of the other problems in the NET cancer world. In a world driven by money and profit NET cancer could not compete. I set out to change that before I actually understood the way cancer funding works. A group of us put together a Relay for Life team called Walking with Jane. We knew the money we raised would not be focussed on NET cancer–in fact would largely be spent on things far removed from our central concern. But none of us knew anything about raising large sums of money–and it seemed a good place to learn that.
And I still had no idea what I was doing.
And we were very successful. That first year, despite having no idea what we were doing, we raised almost $4500. People on the planning committee for the local Relay decided that initial showing meant I’d be a good candidate to chair the whole event the next year. Beyond that, I discovered, it had bought us a seat at the table where the people at the national level would actually return my calls–which is how I was finally able to start unraveling just how poorly funded NET cancer actually is.
Building the NET cancer battle
It was a lot worse than I thought it was.
That summer I took all I had learned from Relay and poured it into raising money for the Boston Marathon Jimmy Fund Walk. I discovered–through the Caring for Carcinoid Foundation–that there was a way I could get the money I raised spent entirely on NET cancer research at the Dana-Farber Cancer Institute. The only catch was either I had to raise $10,000 or join a team dedicated to NET cancer that would raise that amount–and Caring for Carcinoid just happened to have such a team. That summer I raised about the same amount for the Jimmy Fund Walk as our team had raised for the Relay for Life.
I just put my head down and started trying to move forward.
That fall, I set up the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at DFCI, figured out how to generate another $25,000 for NET cancer research, had a friend help me find a lawyer to set up Walking with Jane as a 501(c)(3) nonprofit, and created, with the help of a former student, this website. And I still had no idea what I was doing.
NET cancer financial numbers
The truth is, I still don’t know what I am doing most of the time. Despite that, we found a way last year to more than double what we had generated the year before. Our Relay team created almost $10,000 for the American Cancer Society, my personal fundraising created almost $11,000 for our Marathon Walk team, which we had to rebuild almost from scratch from the year before. In total, we generated–through matching funds and direct donations to DFCI, Caring for Carcinoid, and ACS–just over $100,000.
Fighting NET cancer is difficult on every level imaginable.
For someone like me, $100,000 is a huge amount of money. It is $35,000 more than I made as a teacher in my best year ever. But in the world of cancer research–even in the world of NET cancer research–it does not amount to a significant amount. A single, small-scale Phase I trial of a new drug or treatment runs about $3 million. One conservative estimate puts the cost of finding a cure for NET cancer at $100 million. Given how much we have spent on breast cancer without being able to eliminate it–a disease we have little problem detecting–even ten times that amount strikes me as a fairly conservative estimate.
Starting points
But $100,000 is a start. Generating $200,000 this year would be another step forward. With the first quarter of the year just ended it is time to step back and see where we are in that effort. But that is a story for next time.
