We had a Walking with Jane board meeting Saturday night. The five of us had a meal together and then adjourned to the living room to plan this year’s Relay for Life stuff and talk about the other things we want to do.
We walked through the implications of the last New Directions piece that I posted here late last week and Scott suggested we needed to get more involved with educating people about this disease. He recently finished The Emperor of All Maladies–a sort of biography of cancer and humans’ battles against it–and was struck by how important early detection remains in terms of long term prognosis for any cancer–let alone his one.
The discussion that followed left me thinking about the whole issue of making people more aware of the disease and getting both doctors and patients more educated about it. Monday I had a meeting at Dana-Farber to talk about the permanent fund I want to set up in Jane’s memory. I continued to think about what we had talked about on the drive up to Boston. By the time I got there I had decided the purpose of the fund needed to be focussed less on research and more on making sure what we know gets into the hands of primary care practitioners and patients.
After talking with the person from the development office, she went off to do some research on those issues. This afternoon, I got an e-mail from her about a conversation she had today with someone there that had truly excited her. We are setting up a conference call for next week so they can fill me in on the details of a new program for educating folks about NET.
On the trip back from Boston yesterday I continued to think about the issue of getting people to know more about NET. There is a lot of information on this site on the resource pages that people can use to learn about NET but, frankly, those lists of resources have become a bit daunting for someone new to the disease.
As I have said before, I read or watch everything before I post it on the site. The result is I know an awful lot about this particular brand of cancer. One of the things we talked about Saturday night was me putting together a couple of presentations on NET for general audiences in the local area. But it occurred to me yesterday that I could probably also draft a series of pieces for here that could serve as a basic introduction for those of you coming to this for the first time.
Putting those pieces together will take some time–don’t expect to see them here tomorrow–in part because I will want to have each vetted for accuracy before I post them. I will post them on this page as I get each done and then move them into the About NET section afterwards so that people new to the disease will be able to get a basic understanding of the disease without being overwhelmed by everything in the Resources section. Those pages will not go away. I only intend to put together a primer that will get people started.
Let me know what you think. You can contact me at the address below.
