Remember these two names

I have two names today I want you to hold in your heart and remember: Tom Hess and Gary Groce. Before this morning, they were no more than faces in a crowd for most people. They were not anyone important to anyone outside their immediate social sphere.

This is why I walk, why I write, why I organize…

I knew neither of these two men any more than most of you did. Even now, I can’t tell you if they were married, if they had children, where they lived, or even what work they did. I only know one thing about them: They died from the same “rare” form of cancer–carcinoid/NETs–that killed Jane.

Faces in a crowd of diseases and causes

Thirty-three people who know they have it die every day from NETs/carcinoid. That is more than the number of people who will die in drunk driving accidents today–and about the same number as will die of ALS, or Lou Gehrig’s disease. Everyone worries about drunk drivers and the deaths they cause; there are major foundations trumpeting the need to do something about ALS.

I only know one thing about them… 

And those people are right: We do need to solve drunk driving and ALS.

Putting a human face on things

But carcinoid/NETs is barely a blip on the radar–an artifact–by comparison. MADD raises tens of millions of dollars every year to help pass laws against drunk driving and educate the public about its dangers. ALS groups do likewise. But most of the world knows nothing about NETs/carcinoid. Even many doctors have still never heard of it.

We do need to solve drunk driving and MLS.

After Jane died, I knew I wanted to change that. I wanted to put a human face on the disease. I wanted people to know not only what it was, but what it did in the most intimate way possible. Surely, I thought, no one can hear the story of Jane’s last months and not be moved to do something about this insidious disease.

Still faces in a crowd

Yesterday marked 39 months since Jane’s death. It also marks nearly three years since I began to work to educate people about this disease. During that time another 36,000 people have died of the cancer that took her life. Some were people who were well-known in the carcinoid/NETs community, though few were well-known outside it. Others died largely anonymous deaths–deaths unremarked outside the small circle of family and friends.

…carcinoid/NETs is barely a blip on the radar…

Tom Hess and Gary Groce died of NETs/carcinoid cancer today, along with 31 others. All 33 suffered in the same ways Jane suffered–the perpetual diarrhea, the constant pain, the endless search for a treatment that would do more than slow the disease down, maybe.

Thirty-three faces in a crowd that deserve more than that

But for the general population, the disease remains faceless–lost in a sea of breast cancer, lung cancer, colon cancer, prostate cancer, cervical cancer and the other cancers that people survive or die from.

Tom Hess and Gary Groce died of NETs/carcinoid cancer today… 

NETs/carcinoid patients need to become more than faces in a crowd. I would like to treat those deaths the way PBS treats those of the men and women who die overseas in our nation’s wars: I want to put a name and a face to every one of those 33 currently faceless, nameless deaths.

More than faces in a crowd

Those deaths are not meaningless. Every one of those people had spouses, children, brothers, sisters, mothers, fathers, and friends who loved them and who miss them. They made a difference in the lives of those around them. And they have left a hole in those folks’ lives that can never be truly filled.

I want to put a name and a face to every one of those 33…

This is why I walk, why I write, why I organize–why I breathe: so that one day there will not be 33 holes in the lives of a new set of people every day as a result of this disease. Please help us stop carcinoid/NETs. Please help us find a cure.