One of my goals in starting Walking with Jane was based on the pittance being spent on NET Cancer and Carcinoid Syndrome in this country. I’ve spent some time trying to find out who spends what over the last year and discovered the funding issue is every bit as bad as I thought it was. While figures for 2011 are not yet available–and from what I have seen are somewhat better than 2010–they are still tiny compared to what gets raised for and spent on other issues affecting similar numbers of people.

I am not saying those issues don’t matter or that they should not be funded at the level they are. I am saying that NET/CS research is being funded at far too low a level. Those funding

levels are resulting in the deaths of far too many people. That needs to change.

To that end I have been lobbying the American Cancer Society to increase its funding for NET/CS research and education. As I reported here last month, that request has reached the desk of Dr. Otis W. Brawley, the ACS’ chief medical officer, with the endorsement of the CEO of the ACS’ New England Division.

One way you can help in this effort is to write Dr. Brawley (otis.brawley@cancer.org) with your story about your experience with NET/CS. We need to put clear human faces on this disease at every opportunity for those in a position to help move NET/CS onto the national agenda.

Even those of you who have not been directly affected by this disease can help by writing letters of support to Dr. Brawley.

I know that many organizations would supply you with a form letter you could just put your name on and send. From talking with people over the years I know that is not a very effective way to move policy-makers. It is the personal letter, written in your own voice, that will have the greatest impact. Those letters reveal the real passion of the people writing them in a way no form letter ever can.

And while you are writing that letter, send a copy of it to your senators and representative in Washington, DC. Each has an email address and a regular mail address if you want to increase the impact of what you write. Encourage them to get the National Cancer Institute to move NET/CS onto their agenda in a more substantial way.

These actions will cost you nothing but the time it takes you to write and mail them. But they will help bring this little known cancer the attention it needs if we are going to find the money to find a cure.