There is exciting news tonight for everyone following NET and Carcinoid Cancer research and education. Two events over the last four days give me hope that we are going to beat this thing sooner rather than later.
Saturday morning I received an email from the CEO of the New England Division of the American Cancer Society. I had sent him a long letter on why NET and Carcinoid research needed to become a higher priority for the ACS. He has kicked that letter to the ACS Medical Director in Atlanta and asked him to either navigate the proposal through channels at ACS himself or suggest someone more qualified to do so.
We now have someone on the funding side of the equation at ACS aware of the issues surrounding this form of cancer and that individual is being urged to take positive actions to bring about increased funding.
This morning I had a conference call with two people from the development office at Dana-Farber. The higher ups have approved the national center for NET and Carcinoid Cancer research at Dana-Farber. They are in the process of doing the paperwork to create the Walking with Jane Dybowski Fund for NET and Carcinoid Research and Education (this is not the official name yet) to raise, initially, seed money to get the program started, and eventually to help fund the entire program.
Dr. Matt Kulke will be the head of the center which, in addition to doing research into the disease, will host an annual symposium for doctors who are interested in learning about the disease, including GPs and primary care doctors. The development office has asked me to meet with Kulke and the other members of the group to help plan and serve as an advocate. That meeting will likely take place next month.
Any money sent to Dana-Farber in Jane’s memory or raised in Jane’s name for Dana-Farber in the coming year will be added to the fund. I will let you know the details about how to make contributions once the whole thing is finalized over the next month.
We also have two college groups, one at RIC and one at BSU, organizing Walking with Jane teams for their ACS Relays this year. The region will report to us the total raised by WWJ teams over the course of the year. I am looking for people to organize teams at other schools this year. If we could start a Walking with Jane movement at Relays across New England this year–or even more broadly–that could help us with the ACS funding initiative down the road. Please give this some thought.
A year after Jane’s death, we seem to be making some progress towards raising awareness about NET and increasing the money available to go after it.
Stay tuned.
