A long-delayed meeting

We had our long-delayed Walking with Jane Board of Directors meeting yesterday. We normally meet the second Saturday in January but I had oral surgery scheduled for two days before that date this year, so we moved it later in the month. Then it started to snow. And the further we moved into the spring, the more scheduling conflicts erupted.

My focus needs to reflect that reality.

I understand now why our lawyer advised limiting the board to three people. The problem was I wanted a wide range of expertise and opinion in that group. We ended up with six trustees plus me as chairman. And yesterday, we had serious discussions about the need to expand the board to include people from outside the immediate area. For now, we have put that idea on hold. But in light of some other things we decided thereafter, it is an idea I expect we will return to very soon.

Decisions made

The formal meeting lasted over three hours and included decisions on a mini golf tournament tentatively scheduled for late August, a regular fundraising dinner schedule, a comedy night, ideas for a new public service announcement campaign, acceptance of an offer from Amazon.com to donate a percentage of some sales to Walking with Jane, and a revised corporate sponsorship program.

Then it started to snow.

I’ll write more about each of those things as we get them set up. But the lion’s share of our time–and the main subject of this post–focussed on our goals and our vision for where we want Walking with Jane to go over the next few years. The more we talked the more clear it became that we all felt we needed to refocus our energies on our original reason for starting Walking with Jane.

A brief history

If you’ve followed Walking with Jane for any length of time, you know Jane’s story and you know why, eventually, we set up Walking with Jane. In brief, when Jane was diagnosed with NET cancer in August of 2010, her doctor had never heard of it. When I went online to look for information, there was very little to be found–and much of what I did find was written in doctor-speak. Her first oncologist had heard of it, but never seen a case. She sent us to Jen Chan at the Dana-Farber Cancer Institute.

…we all felt we needed to refocus our energies…

The week after Jane died, one of her doctors called to tell me Dana-Farber was forming a program aimed specifically at carcinoid/NETs. They asked me to be a part of what they were doing–and I agreed. But I have never been one to put all my eggs in one basket–and our friends agreed with me. We wanted to do more.

Past as prelude

So we set up Walking with Jane–first as a Relay for Life team and later as a non-profit. Our goals, from the start, were three in number: first, to raise awareness about carcinoid and NET cancers among both medical professionals and the general public; second, to increase funding for research into the disease and possible cures; and, finally, to provide scholarships for students entering the medical field in the hope of creating doctors, nurses, and researchers who would help fight cancer and other diseases–and for students entering science education to carry on Jane’s work in the classroom.

…I have never been one to put all my eggs in one basket…

To date, we have paid out $16,000 in scholarships and directly raised or directly generated nearly $200,000 for research and awareness. Some of that money has helped seed ground that raised substantially more than that–or so I’ve been told. We’ve done two social media marathons on carcinoid and NET cancer, appeared twice on Doctor Radio’s cancer program, created several PSAs, and done everything we could to change the carcinoid/NETs environment.

The dark side

Frankly, from my perspective, it hasn’t been enough. We haven’t reached enough people or raised enough money–or created an environment in which other groups have been able to raise enough money or reach enough people. Our board disagreed with me somewhat on that issue yesterday. I live too closely to things to see just how far we have come as a community or how much has changed.

So we set up Walking with Jane… 

I see the ongoing ignorance of the mainstream medical community. I see the ongoing lack of funding for research–how hard every NET cancer program has to work to find the research dollars they each need to make a difference. I see our ongoing failure to reach the general public in a meaningful way.

The bright side

But there are rays of hope. Today, we spend four times as much on NET cancer research as we did in 2010 when Jane died. There are 50 papers on carcinoid/NETs at this year’s ASCO conference. We’ve had two new drugs receive FDA approval and have a significant number of potential new treatments in the pipeline, including immunotherapy. PRRT is undergoing trials in the US and is increasingly widely available within the strictures of the trial process.

…it hasn’t been enough.

I won’t pretend Walking with Jane is responsible for any of that happening. Most of it was in the pipeline long before we knew what Jane had. I won’t pretend Walking with Jane will have much responsibility for what happens in the future. We are still too small to have a very large–or even significant–voice in what happens next in research and treatment. I do know we will continue with what we started: trying to make a difference in the lives of others with carcinoid/NETs–and I hope we will get better at that with each passing day.

Eyes on the prize

To do that, though, we need to keep our eyes on our original purposes. We are not trying to provide money for research into the more common forms of cancer. There are plenty of organizations doing that job. We aren’t trying to provide transportation or lodging for people who have to travel long distances–though God knows NET cancer patients have greater need of those kinds of support services than most.

But there are rays of hope.

Right now, the only possibility of curing carcinoid/NETs is early detection followed by prompt surgery. Early detection can only happen through broader awareness in both the medical and general populations about this form of cancer. And we need to continue searching for ways to detect the disease reliably–and early.

Grim realities

But most tumors will continue to remain undetected until they have spread. For those patients, we have no cure–only a handful of palliative treatments that can prolong life and decrease suffering in some patients. We need to continue supporting research into both palliative treatments and potential cures. We need to support the basic research into the disease from which those treatments will come.

…we need to continue searching for ways to detect the disease reliably–and early.

And we need to continue to support the education of future scientists, doctors and nurses–and the educators who will help create those researchers.

I wish we could do more than that–and we will continue to work to educate patients and their doctors about not only symptoms but also potential tests and treatments–but, as Walking with Jane’s board pointed out to me yesterday, most of the time I will still have to function as an army of one when it comes to this organization. Our focus needs to reflect that reality.