“To support scientific research regarding treatment and cure of neuroendocrine cancers” is the second purpose of Walking with Jane, Inc. in the draft Articles of Organization.
Educating people about the existence of NET means nothing if it can offer little or no hope of an eventual cure. Barring extremely early detection, there is no cure for this disease. The good news is that the cancer is slow-growing and we have some ways to slow it down even more and ease the symptoms. And there are some promising therapies being developed that offer the possibility of a cure of more advanced levels of the disease.
But the development of those therapies is going to take time. Ignore the long process of FDA approval. In many ways, that is the least of our worries. Research costs money and devours personnel resources–both of which are in very short supply at the moment. There are only a handful of research labs working on this disease–and barely a double-handful of people involved in research on it at each site at best. And while the Dana-Farber Cancer Institute is in the process of establishing a national center for research into NET, even that group has limited resources at this point.
Walking with Jane has worked closely with the DFCI Development Office over the last year to change that, but we are still in the early stages of that effort. We have established the Walking with Jane Dybowski Fund at Dana-Farber specifically to address those needs–and are in the process of developing a series of ideas to promote that fund and raise money for it. The most advanced of these is the NET Cure Crawl we hope to launch November 10 of this year, but even it is still in the “thinking about” stage. Essentially, it would involve getting indoor shopping malls to let us use the time before they open–the time when many seniors use the malls to get their morning walk in inclement weather–to stage a 2-3 hour walk event to raise money for–and awareness about–NETs. Dana-Farber approved the general concept last year, but I got started on it too late to really do it and do it right.
If you have an interest in helping get this event off the ground in your area, please contact us at walkingwithjane@gmail.com. Walking with Jane has a number of volunteers working on various projects at any one time, but no one, including me, draws any pay from the organization. Last year, we raised just over $35,000 for three cancer organizations: Dana-Farber, the Caring for Carcinoid Foundation, and the American Cancer Society. So far this year, we have raised under $5,000, most of it through–and for–our Relay for Life team, which benefits the American Cancer Society. The ACS spent about $1.5 million on NET research last year.
There are also a number of small foundations involved in trying to increase awareness and research in this area. The largest of these has fewer than 10 people working full-time on the disease. A list of the foundations I know about working exclusively on this cancer can be found here.
Last year, less than $4 million was spent on research on this disease. That sounds like a lot of money, but in the world of cancer research, that is a pittance.
