Why money matters

Walking with Jane does not do medical or scientific research. We try to help create the funds that make research possible. Research requires four things, three of which cost oodles of money. The fourth doesn’t cost money directly, but money spent wisely on the other three can help create the fourth.

She wanted me to have an enjoyable retirement.

Every piece of research starts with a question or an idea. We have hundreds, perhaps thousands, of good questions and ideas about cancer, how it works, and how to cure it. Unfortunately, we only have enough material resources to fund less than five percent of those good ideas. The government won’t fund an idea unless the bureaucrats are fairly certain the idea will work or that the question will lead directly to a cure. Pharmaceutical companies will only fund trials when they are fairly certain the drug will work and that they will be able to turn a profit on it when it does.

The price of counting beans

Once-upon-a-time–when I was very young–American companies took a long view of success. Bell Labs sponsored huge amounts of research purely out of curiosity. Other companies did the same. They believed you could never be sure what new set of questions or ideas might lead to the next telephone or incandescent light. The graphical user interface (GUI) that we all use every day on our computers originated in the Xerox research lab. Then the bean-counters arrived and insisted companies worry more about next quarter’s profits than longterm success.

Every piece of research starts with a question or an idea.

Once-upon-a-time–when I was very young–the federal government was willing to fund basic research–research into things we didn’t have a clue where they would lead or if they would prove useful. We created nuclear power and sent people to the moon. Then the bean-counters took over.

Why what we raise matters

Today, real fundamental research funding comes from private charitable donors more than from anywhere else. I know I lack the knowledge necessary to decide what research money should be spent on. Places like the Dana-Farber Cancer Institute, the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation, among others, have people with good ideas that need to be funded. They have committees with expertise I certainly don’t pretend to have that review proposals and figure out what ideas make sense to look at and which ones don’t.

Then the bean-counters arrived…

Our job is to create the resources that will allow those groups to fund as many researchers and research ideas as possible. We help provide the people, the space and the equipment and supplies that are necessary to answer those fundamental questions that will lead to a cure for NET cancer.

A personal investment

Over the last four years, I’ve donated a substantial amount of my income to the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute through the Walking with Jane Dybowski Fund.  In addition, I’ve personally contributed another significant amount to that fund through my own donations to my Marathon Walk.

Our job is to create the resources…

I’ve also donated another chunk of my income to the Caring for Carcinoid Foundation and to the Carcinoid Cancer Foundation. We won’t discuss the comparatively small amounts I spend on things like the rent for this website nor the hours I spend writing for it and trying to keep up with the research and maintenance.

Paying the price

I am not a wealthy man. I am a retired school teacher. I live frugally: I make most of my meals from scratch at home; I bake my own bread; clean my own house; do my own laundry; keep the thermostat set at no higher than 68 degrees; grow my own vegetables eight months out of the year; clip coupons and watch for sales.

I’ve donated a substantial amount of my income…

I don’t say theses things to brag or to earn your sympathy. I say them to demonstrate how seriously I take the battle against carcinoid/NETs. Eventually, I know I am going to miss the money I have invested in this. I know the good health I enjoy today will likely be gone by the time we find a cure and I can relax and enjoy my retirement. But none of that matters to me. NET cancer took my beloved from me. I will do all I can to keep it from stealing the lives–and futures–of anyone else.

The cost of a cure

But I also know that what I have personally done the last four years financially is a drop in the ocean compared with what we need to truly come up with a way to kill carcinoid/NETs–to remove it permanently from Death’s quiver. It would be so easy to simply write the checks once a year and move on if I did not know how expensive finding the answers to this cancer are likely to prove to be. Jane’s final days haunt both my dreams and my waking hours. But the face isn’t always Jane’s that I see. Rather, it can be the face of any of the NET cancer patients I have met these last four years.

I am a retired school teacher.

Teams I’ve captained the last four years have raised $110,000+ for NET cancer research and another $20,000 for general cancer research and patient support for the American Cancer Society. That’s about what I made my last two years of teaching–total. So one part of me thinks that’s a huge pile of money. But the conservative estimate for what a NET cancer cure will cost to find is $100,000,000. In those terms, we’ve done nothing.

The cost of doing nothing

About 15,000 people will learn this year that they have NET cancer. For many, it will be the end of a years’ long search to find out what ails them. Between 3000 and 5000 will learn they have it because of the advances in diagnostics made over the last four years. All will potentially have the opportunity to use drugs and other treatments we did not have four years ago. But none of those treatments will offer them a cure.

…one part of me thinks that’s a huge pile of money.

About 12,000 people will die of NET cancer they know they have this year. Their deaths will look very much like Jane’s death. Their spouses will suffer the same things I have suffered. Over time, the number of people dying who know they have NET cancer will increase as we get better at recognizing what the disease is. If we do nothing, only that will change. Without a cure, 33 deaths a day will become 40 deaths a day in a very few years.

Why this matters to me

I started this piece planning to talk about our plans to raise money for research and awareness in 2015. But then I realized I needed to provide some background about why raising money matters–and where the money we raise goes–before I started telling people about what we hope to do and how people can help us do it.

About 12,000 people will die of NET cancer they know they have this year.

Jane told me before she went into the hospital what she wanted me to do if she died. She told me not to mourn–or if I did, not to do so for long. She wanted me to move on with my life. She wanted me to forget about her cancer. She wanted me to have an enjoyable retirement. I’ve disobeyed her on every count except putting up the Christmas tree every year. It turns out I can’t move on until the kind of cancer she had is no longer a threat to anyone. Together, we can all make that happen.

(This is the second part of a series on Walking with Jane’s goals and plans for 2015. In the next part, we’ll discuss how much money we will try to raise and how we will raise it.)