Dan Perry has changed my mind about lawyers. He has been a key player in helping me piece together what is about to become the Walking with Jane Foundation. In putting together the paperwork, he has reduced to four clauses what took me four pages to articulate. In the process, he has made me think about what our focus needs to be and to begin to develop ideas about how to accomplish those goals.
Over the next few days, I want to examine those issues and begin to outline some of the ways we can bring them about.
The first purpose of Walking with Jane is “To promote and carry out public education regarding the incidence, cause, treatment and cure of neuroendocrine cancers.”
We have already begun doing that through this website, through a pamphlet we have produced called “Is it IBS? Or is it NET?” and throughout every one of our fundraising events. But we have barely scratched the surface of the work that needs to be done in this area.
While I try to write something new for the website every day, I have fallen behind in getting the new information that comes in almost daily onto the site. Part of that has to do with maintenance projects around the house that were deferred when Jane got sick. But part of it also has to do with the emotional difficulties inherent in regular confrontations with the disease that killed her. As the house projects are completed, I will have more time to work on this, but I suspect the emotional issues will be ongoing.
Educating doctors and patients more broadly is also a big issue. Once someone is diagnosed, they often come to walkingwithjane.org to learn about the disease. But we need to get more information out there that will help both doctors and patients recognize the earliest symptoms of this cancer. The key to anything that even resembles a cure of NET at this point requires the earliest possible diagnosis. To that end, we need to develop additional pamphlets aimed at both doctors and patients. We need to get those pamphlets into wider circulation than the handful of south coast doctors who have them now. And we need to find ways to help patients get that information outside of their doctor’s office.
To that end, I have had some initial discussions with a former student who now works in television about developing a series of PSAs for both television and the internet. My thought is something along the lines of CBS’ “The More You Know” spots, but for the web, we might want something a bit longer and more detailed.
Conferences on this disease already exist for both doctors and patients. Unfortunately, they are few in number and often geographically remote. Those aimed at patients are often available on the Internet after the fact. But those aimed at doctors are generally for specialists and researchers. The Dana-Farber Cancer Institute is planning an annual conference on NET and I have encouraged them to create a track at that conference for educating primary care physicians about the disease. They have been receptive to that idea.
For Jane and me, education was at the center of our lives. It needs to be here as well.
