In July of 2011 I wrote to three foundations whose sights were set on Neuroendocrine Tumors and Carcinoid Syndrome. The first to reply was the Caring for Carcinoid Foundation which operates out of a small office in Boston.

The group was founded by a lawyer who discovered she had NET only after she collapsed in the subway. After discovering how little was being done to fund research on the disease, she created the foundation in order to increase funding for research.Thanks to the generosity of the Foundation’s Board of Directors and corporate sponsors, 100 percent of all individual gifts are directed to research.

I have met with two of the people running the organization face-to-face three times and walked in the Jimmy Fund Marathon Walk in 2011 under their banner. I raised about $4,500 through that walk–all of which went to genetic research on NET at Dana-Farber. In addition, I raised another $5,000 for CFCF last year. I speak with their CFO via email a couple of times a month.

Despite their small size and limited resources they seem to provide the lion’s share of the research money spent on the disease. They piggyback on a wide range of fundraising races and walks across the country. Exactly what they raised and spent last year I don’t know as I write this. I hope to have those figures by the time I write the last section of this series, but I will not even be asking for those numbers for another day or so.

I also heard from the oldest of the foundations focused on the disease, the Carcinoid Cancer Foundation in White Plains, NY. It was founded by Dr. Richard Warner, the father of NET research, back in 1968 when federal funding for NET research vanished due to budget cuts and the refocusing of NCI on the more major cancers. They do not seem to run as many fundraising activities as CFCF but have an extensive support system for NET patients. They helped set up some of the stories in the Press Kit. What they raised and spent on NET last year I do not know for the same reason I do not know what CFCF raised.

Both these organizations helped me sharpen the vision for what Walking with Jane needed to be doing. Their continued emotional support has helped keep me going on days when I just wanted to hang it all up as a bad business.

I have also had a conversation with the Carcinoid Cancer Action Network (CCAN) and another with the North American Neuroendocrine Tumor Society (NANETS). The first group does some fundraising and a lot of patient support work. The second is the professional organization for professionals in the field. They run an annual conference on the current state of research.

There are other groups working on NET and CS, but I have had no personal contact with them.

(Next: CEO salaries: How much are they and do they make sense?)