The NET Cure Crawl idea came to me last fall after spending several hours watching videos of sessions from a patient seminar. One of them ended with the presenter saying that the slow rate of growth for neuroendocrine tumors meant we did not need so much a race for a cure but “the crawl for the cure.” He even had a nice graphic of a snail to go with the comment.
At first, I have to admit, the comment upset me. There is still a part of me that smarts a little when I think of it. For people diagnosed as late as my wife was–which is too often the case–taking our time getting to a cure is not a good answer. Even for those diagnosed at an earlier stage–but after the point where surgery will deliver a cure–slow movement toward a cure is not very helpful, especially for those who are nearing the end of that journey. I have, in the last 17 months met too many of those patients as well.
As I said at one point last week, at our current funding levels we might get a cure, if we get lucky, about 2030. Most of those currently diagnosed with the disease will have succumbed to it by then. And if we don’t get lucky, 2045 will arrive before we have raised enough money to get s sniff of a cure. Essentially, not finding ways to bring far more money into NET and carcinoid research means we are signing the death warrants of the vast majority of those currently living with the disease–just as the federal government essentially signed Jane’s death warrant when they eliminated all funding for carcinoid in 1968.
The word crawl had peculiar resonance for me when I heard it last year.
In winter–or when it got too hot and humid in the summer–Jane and I would frequently go to one of the local malls to walk for an hour or two. During school vacations we would arrive a couple of hours before the stores opened and join the “senior citizens” and store employees for their morning power-walks. We called these excursions “mall crawls.” Afterward, Jane would get a coffee and I would get a juice and we would sit in the food court for a bit talking and looking out the window.
My thought was to get a bunch of malls to let us do fundraising/awareness walks on November 10–Worldwide NET Cancer Awareness Day. But the idea came to me too late to really organize even one–though I started to do so. I talked with some people at Dana-Farber about it and it seemed to make sense to them, but there just was not enough time to think through how to do it.
I have been doing a lot of thinking about the “Crawl” in recent months. But I have also seen the number of volunteers it takes to pull off a major event with a single venue. Just the planning of the Relay for Life takes upwards of 40 people for a single site. It takes hundreds of volunteers just to staff the water and food stops on the Jimmy Fund Marathon Walk. My initial thought was the great difficulty with the idea would be getting malls to buy into the idea. But the more I have learned by watching the Relay for Life, the Walk for Hunger, and the Marathon Walk, the more I have come to realize the real problem will be finding people to organize and staff each event site.
So tonight’s call for volunteers is about those two things. My plan is to try to pilot this thing locally this fall at three local malls, assuming I can get them on board. But I need people to help plan that event–and people to help staff the sites when we get there.
Drop me a line if you can help.
