Resources 2010

The day before Jane died–when we already knew there was nothing left to do but let her go–Jennifer Chan, Jane’s oncologist, and I had a conversation about Jane’s legacy as a patient. Jen told me that afternoon that what they had learned from her over the four months from Jane’s diagnosis to her death had doubled our knowledge of the disease. Two or three of the things the came out of that knowledge have made a substantial difference in the lives of other patients since.

…curing NET cancer now will become a reality.

But what stunned me that afternoon was I knew pretty much what we had learned–and it wasn’t very much. That statement demonstrated just how little we knew in 2010–and it didn’t take me very long to figure out why we knew so little about a form of cancer first diagnosed nearly 100 years before. Not many people had spent any serious time studying what we then called carcinoid cancer–and their efforts had been hampered by the tiny amount of money available to study the disease.

The search for resources

In 2010, we spent less than $2 million on NET cancer research. The Dana-Farber Cancer Institute had one doctor working full-time on it. Jen was working on it only half the time. The rest of her day was spent on other gastrointestinal cancers. There wasn’t money to do much more than that.

…Jane’s legacy as a patient.

And that problem existed virtually everywhere else in the US. There were pockets that were doing more, but they were few and far between. $2 million just doesn’t buy many researchers or much lab space or much equipment. People were dying as a result–but they were dying quietly and no one was paying much attention.

Increasing resources then

Jane, too, died quietly–but I was determined to make some noise about it, if I could just figure out how to do it. And a chunk of that noise was aimed at creating the resources we needed to make a difference in the lives of NET cancer patients. Raising awareness was one step in that process–but setting an example on the financial side needed to be part of the equation.

People were dying as a result…

So in June of 2011 I signed up to do the Jimmy Fund Marathon Walk. In July, someone I met at the Caring for Carcinoid Foundation (now the NET Research Foundation) told me about their team and that because they raised over $10,000 they could earmark that money specifically for NET cancer. I joined that team immediately.

Building resources

I had no idea what I was doing. I’d never tried to raise money before I’d started doing fundraisers for our Relay for Life teams that spring. We’d managed to raise barely $2500 in the six months between Jane’s death and those events–and it had been exhausting. Now I was going to try to raise money on my own for an event that would take place a good way from where my fundraising base was.

…I was determined to make some noise…

So I set my goal for the minimum–$300 seemed like an awful lot of money to me then–and posted that I was walking the Marathon in September on my brand new Facebook page. In less than an hour, I’d garnered $500 in donations. I reset my goal to $1000, then $1500, then $2000.

The long Walk to resources

Things eventually slowed down, but when the dust had settled, I’d raised about $4500 in less than three months. I raised $10,000 in 2012, $13,000 in 2013, over $15,000 in 2014, and broke $30,000 in 2015. I had lots of help last year as our Relay team turned its full attention to NET cancer after the Relay in June.

I had no idea what I was doing.

In 2012, I took over as captain of the Caring for Carcinoid Team, changing its name to include Walking with Jane–yes, I have an ego. The size of the team shrank–as did what the team raised. In 2013, we were even smaller when three of our team members–and our best recruiter–lost their father to NETs in June. But we raised more money. In 2014, we added another team to ours and grew our own team beyond that. That group raised over $66,000, And while we had a smaller team in 2015, we narrowly beat that number.

Committing personal resources

But in the fall of 2011, I had quietly made another decision. I discovered that Jane’s small pension was coming to me–and it didn’t seem right for me to keep that money for myself. Certainly, I know I will likely need that money someday and that I should be salting it away in the meantime. But it seemed a better investment to put that money where it could do more immediate good.

The size of the team shrank…

So I pledged $100,000 over five years to set up the Walking with Jane Fund for Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. Last month, I renewed that pledge for another five years. It isn’t a lot of money compared with the major donations of folks like the Yawkeys and people who get their names carved on the walls–but that isn’t the point. I look at that donation as seed money that I hope will get others to do what they can–whether less or more than that donation. Every dollar counts.

Creating the resources we need

Because the fact remains that we still don’t have the resources to really go after NET cancer the way we can go after lung cancer or breast cancer or prostate cancer or colon cancer. Last year, with luck, the total raised and spent in the US on NET cancer will be $8-10 million–a great improvement over where we were in 2010, but still far from what it will take to find a cure. We’ll have more doctors, researchers and lab space dedicated to NET cancer than we ever have before, but still far from what it will take to find a cure.

…it seemed a better investment…

Last month, Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors launched 3-in-3: The Campaign to Cure NET Cancer. The plan is to raise $3 million in three years for NET cancer research at DFCI. I gave the welcoming speech and closed the meeting with a call to create the resources to cure this foul fiend of a disease. (All the money raised by both our Walk team and the Walking with Jane Fund will count toward this campaign.)

Building on our resources

As of this afternoon, we have raised $425,000 in less than a month for 3-in-3. But we need to keep that momentum going. More, we need to extend this idea to other NCI cancer centers with NET cancer programs and other NET cancer foundations so that over the next three years we raise nationally $45-60 million so that we can fully exploit all the new knowledge about NET cancer researchers are generating.

I gave the welcoming speech…

In 2011, Walking with Jane raised about $7000 for cancer research–including what we raised for Relay for Life. My goal, at the end of that year, was to double that amount in 2012, double that again in 2013, 2014 and 2015. By that measure, we should have raised $102,000 this year. That amount did not pass through our bank account this year.

The doubling cube of resources

But when I add up what our Relay team raised and what our Jimmy Fund Walk team raised, and what I personally donated to DFCI and the other major NET cancer foundations, we came very close to that mark.

…we should have raised $102,000 this year.

My goal in doing that was to encourage similar increases in resources in other groups over that same time period. I doubt Walking with Jane had much to do with the fact NET cancer organizations raise four times what we did in 2010 today. Walking with Jane simply does not have that kind of reach or influence. Many of us arrived at the same goal, seemingly independently, and took steps to make that happen. And we seem to have done so entirely with new resources–so we are not taking money from other cancers to cure our own.

Critical mass

And the events of December 9 at Dana-Farber convince me we are nearing the critical mass to make #cureNETcancernow more than a simple hashtag for a fundraising campaign; we are nearing the point that curing NET cancer now can become a reality.

…we came very close to that mark.

You can help make it so.

Editor’s note: This is the third in a series of pieces about where we have journeyed over the last five years–and plan to go over the next five. The next part in the series will look at goals for the next five years–and plans for how to reach those goals.