First, there was the idea: an organization to help find the answers Jane and I could not find about neuroendocrine cancer and carcinoid syndrome. It was not that the answers were hidden–there just were not any that were very helpful to us. NET–unless discovered very early in its genesis–was–and is–a cancer without a cure.

When I decided to take part in the Relay for Life last year, I asked some of our closest friends to help put together a team. We did well, but the money we raised was not ear-marked for NET research. It went into the common American Cancer Society pool. But we did well enough that I was asked to chair the Greater Fall River event for 2012. That position allowed me to talk with the New England President and, eventually, the national chief medical officer. Both were supportive and made it clear ACS was already doing some funding of NET research.

But as I talked with other organizations, it became increasingly clear that what was being raised and spent on NET was a pittance compared to almost any other form of cancer. Money pays for research–and money was in short supply. I knew I needed to focus my energies increasingly on that problem. In September, I tackled the Jimmy Fund Marathon Walk with the Caring for Carcinoid team because all the money they raised would go to NET research at Dana-Farber.

But that was a starting point, not an ending point.

From the start, I wanted to create a foundation to support research and education on NET and CS that would keep Jane’s memory alive. She had said from the day she was diagnosed that while no one had beaten this disease before, she was going to be the one to do it. When she died, I decided her death was going to be the beginning of the end for this disease if I had anything to do with it. The people at the Dana-Farber Cancer Institute stepped up before I could move. The day of her wake, I got a call from someone there. They planned to establish a Program in Neuroendocrine and Carcinoid Tumors.

In February of this year, we established the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber. Within a month, Dana-Farber’s Program had launched its own website. In May, Walking with Jane, Inc. received its charter as a 501(C) (3) non-profit.

The end of last week, we received our tax ID number from the IRS.

Today, we have a bank account.

In the 18 months and 25 days since Jane’s death, we have gone from an idea, to a group, to a legal corporation. We’ve raised and donated over $50,000 to Dana-Farber, to ACS, and to the Caring for Carcinoid Foundation. We have designed and manufactured shirts and bracelets and water bottles and buttons. We’ve created a website and a Facebook page and a press kit a pamphlet on NET.

Perhaps more importantly, we have begun to inspire others to join us on this quest.

And we’re just getting started.