I spent  the first half of this weekend at the American Cancer Society New England Summit event in Springfield, MA. I came away more convinced than ever about how widespread NEC may turn out to be as, again, I encountered more people than I would expect who need to be screened ASAP for the disease given the symptoms they described to me. As I have said many times before, I am not a doctor. My advice to those exhibiting symptoms is always the same: go get tested.

I will repeat here what I say on the “About NEC” page: If you have Irritable Bowel Syndrome, you need to think about getting tested for the disease. If, in addition to IBS, you suffer from two or more of the other symptoms on that list, you should not just think about being tested, you should insist on being tested. This is not a disease to trifle with.

And I also came away more convinced than ever that we need to be raising and spending far more on NEC and CS than we are.

On that front, I received an email today from Ellen Eisner at CFCF. Our fundraising total for the Jimmy Fund Marathon Walk, as a team, is just short of $34,000. We have until November 1 to continue raising and turning in money for that event. The money will go to finance a study  to identify the genes that cause the tumors to become carcinoid, with an eye toward developing new types of targeted therapies for this type of cancer.

If you have been following what is going on on the Resources page, you know that there are a number of things with the potential to make a significant difference in the lives of those who suffer with this disease. Those potential treatments will also make a significant difference in the lives of those patients’ families. But they will remain mere potential if the money does not exist to move them from Phase I and II trials to Phase III trials and eventual FDA approval.

One of the themes of the ACS Summit this weekend was “Save more lives faster.” They talked consistently about the need to come up with the money for more research–both through fundraising and through lobbying the federal government to increase the funding for the National Cancer Institute.

I spent part of this weekend lobbying myself. But I wasn’t in Washington. Instead I buttonholed every ACS bigwig  I could find to argue for meaningful funding levels for NEC/CS research. The head of the New England Division is supposed to get back to me this week so we can have a detailed conversation about what I told him was the ACS failure to fund NEC research at a meaningful level.

The truth is that even if CFCF raised $40,000 from last weekend’s walk, it would not be enough to fund the research we need at the level and quantity we need it if we are going to give those afflicted with this disease a consistent fighting chance. CFCF has raised a million dollars a year for the last several years. But that is a drop in the ocean compared with the billion dollars a year it has cost us to begin to put breast cancer on the run.

And do not mistake me: breast cancer research matters to me. Both my sister and my sister-in-law are survivors because of the money we have poured into breast cancer.  I have former students whose mothers will be there for graduations and weddings and grandchildren because of the money we have spent there. I have former students who will see their children reach those same milestones because of what we have spent there. I do not begrudge one nickel of what we have spent trying to unravel that.

But the effort it has taken to make all those folks long-term survivors needs to be matched if we are going to make those with other cancers–and NEC in particular–equally long-term  survivors.

So I will lobby everyone I can think of  if that is what it takes.

I watched what this disease did to my wife. Daily I experience what it has done to me through her absence. I do not want anyone to have to experience what Jane experienced those last months of her life: the loss of mobility, the loss of physical control over every part of her body, the loss of self esteem and pride, the loss of her mind. I do not want anyone to go through what I went through in those days as I watched those things happen–gradually knowing there was nothing anyone could do to stop them from happening. Nor do I want them to go through this aching loneliness and emptiness I feel now.

But somewhere in America–right now–someone else is going through what Jane went through. Their spouse is going through what I went through. There will be no more birthdays, no more anniversaries, no more nights on the couch together.

And that story will be repeated over and over again until we have raised the money and done the research and gotten through the Phase I and Phase II and Phase III trials and the FDA  approval process.

And that knowledge hurts.