Team tops $50,000–unofficially

Unofficially, the Caring for Carcinoid/Walking with Jane, Hank, and Anne Boston Marathon Jimmy Fund Walk team has now raised more than $50,000 for research into carcinoid/NETs since February. Part of me is thrilled by that number–and part of me is deeply disappointed by it.

…none of us alone has a staff big enough…

Our team now boasts 44 members–and, again, I am both thrilled and disappointed.

Half-full and half-empty

Most readers are now shaking their heads: What more can he want, they will ask? That team is huge compared to most others. They’ve already raised an average of over $1000 per person. And $50,000 is a huge amount of money.

Part of me is thrilled by that number…

And they are right–on all counts. Those numbers put us in the top ten teams in the event in terms of both money raised and team size. I am very pleased with that success. The individuals on the team have worked hard to raise money and recruit walkers. Because we are spread out over a huge area–from New York City to Manchester, NH and from Boston to eastern CT, most of those fundraising and recruiting efforts have been solitary affairs, which makes that success even more incredible.

A good start

But I am far too aware of how far short of the financial needs that Herculean effort falls. A single Phase I trial can run $3 million. On that scale, even $100,000 is a drop in the bucket. Funding for carcinoid/NETs this year will still not amount to a rounding error on what we spend on any one of the “major’ cancers.

…$50,000 is a huge amount of money.

Still, that $50,000 is a lot more than the zero that would be there without our efforts. And it is a really good start toward building the kind of team we need to have to create a cure for this disease. We still have nearly a month–until October 15–to raise money for this year’s walk. So if you haven’t made a donation yet…

Filling the glass

My mind, however, is already thinking about next year–and beyond. I’ve actually been thinking about it for several weeks now, dating back to when I first began designing this year’s Jimmy Fund Walk team t-shirts. Jenaleigh Landers and I had a conversation back in July about the name of our team–which, with the addition of her father’s and Robert Ramsey’s wife’s names, is beginning to get a bit long.

So if you haven’t made a donation yet…

Out of that conversation came the idea for a new name for our team next year: Allies Against CarciNETs. That title headlines this year’s shirt, but it is a concept that is about more than our Marathon Walk team. Well over 100,000 people in the United States know they are battling this cancer. We have no way of knowing how many more are fighting it without knowing it–but even the most conservative guesses make that number out to be significantly larger.

Allies for research

In modern times, the outcome of most wars has been determined by the strength of the alliances formed to fight them. To a large extent, most of the organizations created to fight the war against carcinoid/NETs have done so in the same isolation members of our Walk team have faced this year. The Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation–the two biggest foundations working on this disease–talk to each other and coordinate some of their activities. Walking with Jane tries to do the same.

…thinking about next year–and beyond.

But there are, perhaps, dozens of individuals, small groups, and organizations out there fighting to help find a cure for this disease who are unheard of outside of their region–or even outside of their local area. They get little or no recognition outside of a small group of followers in their area. Their events get no real national or–very often–even regional publicity.

Research and dollars

I know the NET Alliance exists. They have a nice website and provide invaluable resources for patients and caregivers. But their purpose seems to be patient, caregiver, physician, and researcher support through information, not raising money to support that research or bringing patients and caregivers together to do those kinds of things.

…there are, perhaps, dozens of individuals, small groups, and organizations…

Josh Mailman pointed out two weeks ago that we have a serious financial problem on the research side. We currently spend less than $50 a year per known patient–and more than two-thirds of that amount comes from trials drug companies decide to run. In terms of what comes from private sources, he thinks the figure is closer to $15 per known patient.

Building research–and infrastructure

We can’t fund a cure on that kind of money. We can’t really sustain the basic research we need to do–or the infrastructure that supports that research at our current funding levels. Neither drug companies nor the federal government will pay for that kind of research. That money has to come from private donors.

…we have a serious financial problem on the research side.

What I am proposing is an umbrella group–Allies against CarciNETs, for lack of a better name–made up of all the groups engaged in this fight, no matter their size or resources. It will not aim to promote a single day of awareness –as netcancerawarenessday.org does. Rather, it will work to facilitate and publicize fundraisers aimed at supporting regional cancer centers with NET cancer programs and creating a larger pool of funds for doing basic research, both regionally and nationally.

Building on what we have

The idea here is not to replace CCF or CFCF--I’m hoping they will be charter members. Rather, it is to augment and create greater leverage for the work they are doing. By creating a conscious network of all the smaller foundations and support groups we can increase the cross-pollination of ideas for raising money–and get those ideas out there to a much broader audience than any of us can currently reach on our own. It will also help each of us access people with the skills or knowledge we may individually lack.

We can’t fund a cure on that kind of money.

For example, I know a great deal about writing press releases and doing PR, but I am not very good at developing marketing strategies. I write powerful fundraising letters, but don’t have a broad enough mailing list to take full advantage of their potential. I’m certainly willing to let other organizations use those letters without any charge beyond a thank you, if it means we can garner more funds to support research and maintain and build up the infrastructure to enable that research to move forward.

The power of together

And none of us alone has a staff big enough to really do much nationally on our own. Together, however, we might be able to pull off a higher profile event.

The idea here is not to replace CCF or CFCF…

There are lots of problems we will need to resolve if we are to successfully raise the general consciousness about this disease. In a later post, I’ll discuss what I see as some of the issues we all need to think about.