It’s official.

I received the letter today that makes me an official member of Visiting Committee for the Gastrointestinal Cancer Center at the Dana-Farber Cancer Institute.  The term is for three years and can be renewed.

What all of this means in terms of the fight against NETs and Carcinoid Syndrome remains to be seen, but the letter says Visiting  Committee members have partnered with Dana-Farber by providing leadership in outreach, advocacy, networking, and education. How much real influence this position will provide I cannot, at this point, say. It would seem, however, that we have at least gained a seat at the table–and that we may be able to generate more interest in NET at Dana-Farber among the higher-ups.

Not that they have not already been influenced by someone. We already have the Walking with Jane Dybowski Fund for NEC, a new center for NEC research, and a website is already in the design phase at DFCI. Only the WWJ Fund can be attributed directly to our efforts through Walking with Jane. The center was already in at least the talking stage before Jane’s death–and the website is a logical outgrowth of that effort.

But I have seen too many important enterprises start out well and then collapse. The 60 years of my life are littered with cautionary tales: the space program and the war on poverty–both killed by politics; education reform–and in particular my attempt in the ’90s to create a new vision of English as a subject–killed by budget cuts and greed; health care reform; nuclear disarmament; Apple Computer after it dismissed its visionary…

I will not treat this as a sinecure. I will not treat this as a dinner once a year and a tour of this or that lab. I will not treat this as an opportunity to rub elbows with the wealthy, the powerful, or the influential.

Anyone who knows me knows I will use this as an opportunity to make sure the work keeps moving forward. They know I will ask the awkward questions and raise the difficult issues. I will do everything I can to keep the work focused on finding answers, educating doctors, and helping patients.

I don’t pretend to have the scientific and medical background that I would like to have as I begin this part of this work. But I have been up close and personal with the monster that is NET–that is Carcinoid Syndrome. And I intend to remind people on a regular basis that this work is not about accolades or reputation: it is about laying this disease to rest so that no one has to go through what Jane suffered.

I have no reason to believe anyone at Dana-Farber–or anywhere else–wants anything other than a cure for this nightmare for exactly that reason. But if anyone forgets, I am ready to play Jiminy Cricket–or any other role they need me to play.