Thank you for coming. Great things are going to happen here and I'm glad you've chosen to be a part.
My name is Tom Cole. My mother, Irene, died of pancreatic cancer in February. [Read an interview with her here.] As I said in the letter many of you received, I guess she was lucky. She lived more than 2 years from diagnosis and surgery, and was fortunate to have an incredible doctor to guide her care. My father, Frank, and sisters, Mary Beth and Judy, and brothers, Mike and Frank, and our families shared wonderful times with her during her illness. She cared for her grandchildren and for us. We all cared for her until the end.
But you know it wasn't enough time.
Now, during my mother's last hospitalization I went home one night and for therapy, I guess, tried to find something I'd read or heard — about how little money was spent for pancreatic cancer research. I couldn't find the reference, but I needed to know. So I found reports from the National Cancer Institute about what it funded, and numbers from the American Cancer Society on how many cases of different cancers there are, and how many deaths, and I worked up this spreadsheet comparing funding. I was outraged. But I didn't know what to do with what I learned.
After my mom died, Susan Wagner, a friend of mine who has worked on the UMass Walk to Cure Cancer, sent me an email, saying she was sorry to hear the news of my mother's death. Because Susan was involved in the walk, I unloaded on her:
"One huge frustration with what my mother fought for two years — pancreatic cancer — is that so little is spent on research," I wrote. "I think the projection for this year is 30,700 new cases and 30,000 deaths. [National Cancer Institute] funding for PanCan research is low when ranked by absolute dollars and by number of cases, horribly low when ranked by number of deaths, and unconscionably low when ranked by ratio of deaths to new diagnoses." …
"Because there are so few long-term survivors …, there are few patient advocates. We are lucky to have some of them here today. A precious few survive.
So Susan put me in touch with someone who's turned out to be an incredible ally, Dr. Dario Altieri. My challenge to him was:
What does it take to get an institution like UMass committed to fighting this disease?
What does it take to get the research going that is the only hope for a cure or more effective treatments?
After an exchange of emails, I met him here with one of my sisters, Mary Beth Curnen. We found out what was going on at UMass and more importantly what was possible. We also learned that Dario wants to hear from all of us, and there will be time for that today. He knows that this institution needs community support and involvement to succeed. This is not an ivory tower. And we're not a nuisance. So he set up this meeting so other families could learn more and we invited you.
I believe that those of us who have lost someone to this disease, who have seen the devastating results pancreatic cancer can have in a few short weeks or months — We are the only ones who can make pancreatic cancer research a priority.
Here at UMass they are committed to getting what they learn upstairs in the lab into the hospital over there as quickly as possible. We know there's no time to wait.
There is no known cause for most pancreatic cancers.
There is no early test.
There is no cure.
It's up to us to make something happen. And that's why we're here today.
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Tom Cole. Questions, comments and suggestions: info@
pancreaticalliance.org