I started working on this project just about a year ago. I didn’t know much about NET–and what I did know I had learned in ways no one should have to learn anything: I had learned about it by watching my wife die from it. I had learned about it because in my grief, I needed to understand the thing that was killing her–and that killed her. I needed to crawl inside its head so I could save her life. And after her death, I had to learn about it so I could find a way to kill it.

For a time I honestly thought about finding a way into medical school. I thought about a Ph.D in biology. I thought about nursing. It eventually dawned on me that any of those paths meant an endless grind of coursework. I would need to get another bachelor’s degree, likely another master’s, spend four years in medical school, then do a residency. I would be 70 before I could do anything meaningful, even if I could find a medical school willing to make the time investment in a senior citizen who would qualify for Social Security before he could start dealing with the real issues I wanted to deal with.

So I started reading. And the more I read, the more it became clear to me how little we knew about the supposed zebra that had kicked my wife to death. We were not even sure how many people had it. We still are not. We lack the kind of knowledge about it that we have about many other forms of cancer. And general practitioners don’t have enough information to even suspect it exists until after they see their first case. I knew how much trouble we were in when I read the motto of one organization fighting the disease: “If you don’t suspect it, you can’t detect it.”

And then I discovered the money issues: the federal government was spending next to nothing–had, in fact, spent nothing at all for 40 years; less than a handful of organizations were raising money for research–and they were not raising much. The year Jane died, less than $3 million was spent on research into NET/CS. And things are only marginally better now than they were then.

Despite all my years in journalism, I have discovered how little I know about public relations and fundraising over the last 12 months. I thought getting the attention of the major media would be a simple matter of presenting the facts of the case to the right set of people–and I thought I knew who those people were. And I was wrong.

I thought once I had worked out how Facebook worked, we would turn into Barack Obama’s 2008 campaign. I thought once this website was up and running, we would have a vehicle people would pay attention to. I thought we would find a way to make this cause viral.

But the learning curve for all of this has been steeper than I anticipated–and the amount of work has proven far greater than I expected as well.

That does not mean I am giving up. I’ve learned a lot in 12 months’ time. And I have more to learn.

But we are coming for you, NET. We will hang your scalp on the wall. We will.