One of the challenges of writing this kind of thing every day or two is the sense of functioning in a vacuum. I can check the site stats and see that people are reading what is here but I get very little feedback about the impact of the words I write beyond the occasional Facebook post that says something along he lines of “that was beautiful.” But whether or not these scribbles are having the effect on people I would like them to have is not easy to tell.

And it is not like we haven’t set up a way to get that information. The Forum section of this website exists so that we can have actual conversations about what is on the site and what is going on in the NET world–both among patients and caregivers and among doctors and researchers.

A major point of this whole enterprise is too raise awareness about NET and get people talking about ways to fight back. I want people to know about the funding issues. I want people to know about the struggle people with this disease face. I want people to know about the struggles researchers and doctors face in trying to find ways to fight this disease.

And I want to give those who are new to this disease easy access to the information they need about what the latest research says so they can be active patients in their own treatment.

Becoming your own advocate is incredibly important with a disease like NET. Most doctors don’t even know the disease exists. Those general practitioners who know about it at all have very often only learned about it because of a patient they have had who was diagnosed with the disease.

And this is very much a disease where what you don’t know can kill you.

We all need to be more than passive consumers of information. If cancer in general matters to you, you need to do something about it. That may mean getting involved with Relay for Life or the Komen Walk for a Cure, or any of the many other programs out there.  If you are concerned about NET you need to find ways you can help with that through things like the Marathon Walk, the Pan Mass Challenge, or any of the other campaigns that work to raise money for that.

But we all need to do something about the things we care about. Otherwise, for all the ability of technology to get the word out there, nothing will change.