Five years of unreached goals

I flew back from Seattle five years ago this weekend. On those flights, I set down on paper my plan for the first five years of my personal war on NET cancer. I’ve spent some time this week thinking about that plan and why it has failed in so many ways since.

…I was egotistical enough to think I could do better.

Part of it was my own innocence. I didn’t realize how steep the learning curve would be–nor how many things I would have to master to even begin to accomplish those goals. And I underestimated the depth and power of my own grief and how much it would cripple me. Things I thought would be easy have been anything but. And the things I knew would be hard have proven even more difficult.

Five years of raising awareness

The most basic goal was to work on awareness of the disease. I know how to get the word out about issues. I can write articles, make videos, imagine and create pamphlets. I’ve taught advertising and public relations. I know how all those things are supposed to work.

Part of it was my own innocence.

But just because you understand the theory of how that business works does not mean you understand how it works in practice. There are thousands of issues out there clamoring for attention. And getting people to pay attention to any one of those issues for even a fraction of a second has proven very difficult.

Five years of reaching out

I expected to educate three million people about NETs in the last five years. We haven’t come close. I’ve pieced together scripts for several public service announcements of varying lengths and have produced four of them. They exist on Walking with Jane’s YouTube channel and I’ve used them on our Facebook page. Fewer than 1000 people have seen them.

The most basic goal was to work on awareness…

I produced a pamphlet on NET cancer and Irritable Bowel Syndrome with the idea of getting copies into doctors’ offices across the country. Two local offices actually took them, but what they did with them I have no idea. I’ve used them any time Walking with Jane has done a yard sale or craft sale or other public event. And I’ve sent them to people who donated money to the cause. In five years, the total number of those pamphlets distributed is less than 500.

Five years of figuring things out

The Internet and Social Media seemed like another good avenue to educate people about the disease. Of all the things I have tried to do to raise awareness, my efforts there have been the most successful. In the just over four years since the launch of walkingwithjane.org, we’ve had about 20,000 people visit the website. Each person, on average, has read three or four items. That’s about 61,000 hits since the launch.

Fewer than 1000 people have seen them.

But the vast majority of the people who read walkingwithjane.org are people who already have been diagnosed with the disease or are caregivers for those people. The general public remains largely ignorant of NET, of carcinoid, of anything to do with the disease about 120,000 Americans deal with every day. I still have not figured out a way to break out into the larger population.

Five years of uncertainty

Unfortunately, no one else really has accomplished that either. Certainly, other blogs and websites have a bigger audience than walkingwithjane.org and our Facebook page have. But they, too, fail to reach a more general audience. None of us has figured out a way to make the jump from NET cancer patients and their caregivers to the general public.

The general public remains largely ignorant…

And we need to make that jump. We don’t really know how many people out there have this disease and don’t know it, how many cases of IBS are actually NET cancer, how many cases of right-side heart failure are caused by NET cancer, how many people die from NET cancer and are told something else killed them. When doctors don’t know to look for it–let alone suspect it–and patients don’t know even that it exists, we have a public health problem of unknown size and scope.

Five years of building research

The second problem I thought about on that plane trip home was the number of people working on NET cancer. The number at the time was tiny. I think it is better than it was, but I doubt there are 500 people in the world really working on this form of cancer even today.

…we need to make that jump.

Part of that has to do with the awareness problem: you can’t research something you’ve never heard of. But part of it has to do with a lack of resources. The year Jane died, we spent less than $2 million on NET research in the US. You can’t hire very many researchers for the kind of money. Things are better than they were five years ago, but I’m pretty sure I had very little to do with that.

Five years of building support

And money was the third piece of the problem. Somehow, we needed to raise an awful lot more money if we were going to come up with the people and the lab space necessary to get enough knowledge to begin looking for ways to cure NET cancer.

…I had very little to do with that.

My vision for what eventually became Walking with Jane was an organization that would address all three of these issues in ways they had not, to that point, been done as far as I could tell. I envisioned an organization with a broad national reach that would double what was raised for NET cancer every year for five to ten years until we had enough coming through multiple doors to make a substantial difference.

Five years of external obstacles

Yes, there were two organizations aimed at research and awareness, but they didn’t seem to be having much impact. And I was egotistical enough to think I could do better.

…money was the third piece of the problem.

I was wrong. Given the obstacles in their path, they were doing the best they could–the best anyone could. We weren’t talking about a cancer that regularly killed children; we weren’t talking about a cancer that killed quickly; we weren’t talking about a cancer that affected millions–at least not as near as we could tell. There is nothing sexy or exciting about NET cancer that will get a rise out of the general public.

At least not yet.

Editor’s note: This is the first in a series of articles looking back on Walking with Jane’s goals over the last five years and setting goals and planning for the next five.