Category Archives: Goals

Money funds research–and we don’t have enough

awareness, Fundraising, Goals, NET Cancer Awareness Day/Month

Research costs money

Everyone wants a cure for cancer. But virtually every cancer requires a different cure. What works on one form of breast cancer doesn’t always work on another form of breast cancer, let alone a melanoma, lung cancer or pancreatic cancer. While people are part of the answer to cancer, so is money.

Research is blindingly expensive. Last year, the US government alone spent $699 million on breast cancer research–and has spent nearly $4.5 billion since 2012. That does not include the billions raised and spent by foundations dedicated to that form of cancer. We have some breast cancers we can cure, assuming we catch them early enough, but we can’t cure all of them.

Money is the root of it all

Compare that to the roughly $15 million total from both government and private sources for NET cancer this year and you’ll begin to understand part of why we are not swimming in NET cancer therapies. Add to that the reality that NET cancers are unlike almost any other form of cancer we’ve encountered and you have an iron-clad reason for the frustration both patients and researchers feel.

In addition, that $15 million number is a huge jump from the roughly $7-8 million raised and spent from all sources in 2015. Numbers from prior years are actually far worse. In fact, there was no federal money for NET cancer research from 1968 to 2008–and very little private money, either.

Weighing the voices

That reality both terrifies and angers me. We spend more per diagnosed patient on prostate cancer, on lung cancer, on breast cancer–than we do on NET cancer–and it isn’t by a few dollars. What we spend on NET cancer does not amount to a rounding error on what we spend on any one of those forms of cancer.

But the logical part of my mind does get it. When we can see tens of thousands of cases of those diseases–compared to roughly 16,000 new diagnoses of NET cancer every year–the shouts of those patients and their families drowns out other voices in the ears of funders.

The myth of the secret cure

This summer, I was out putting up posters for our annual miniature golf tournament. I went into one shop to ask if they could put one up for me. Now sometimes chains have policies against advertising local events. Sometimes stores have nowhere to put up a poster. Sometimes they limit things to local religious groups or veterans’  groups–and I get that.

But this man’s answer stunned me: He told me he believed, given all the money we’ve spent on cancer research, that we already have a cure for cancer–that the drug companies are holding out on delivering it because they are making so much money on the drugs we have that delivering a cheap cure is not in their best interests.

In the weeds

I’ve spent a lot of the last six years learning about cancer and how complex a thing it is. I spend a lot of time with oncologists and researchers. I see how the loss of each patient tears them up. And I know if a cure existed and drug companies were withholding it, those doctors and researchers would not let that stand.

So where does all that money go? Let’s start with what it takes to run just one small lab. I got to spend one whole day last spring in a research lab at the Dana-Farber Cancer Institute in Boston. I was there to observe and take pictures for a project we were working for 3-in-3: The Campaign to Cure NET Cancer–a fundraising project I serve as volunteer chairperson for.

The cost or running one lab

Eight people worked in that lab on a variety of research projects. That day, most were working on NET cancer research of one kind or another. They weren’t testing drugs–they were doing the kind of basic scientific research that unravels how NET cancer works. Their work may uncover a way to cure NET cancer eventually–or, more likely, another way to slow the disease down so that patients can live a longer time with a better quality of life.

They weren’t working full-time on NET cancer. DFCI’s NET cancer program doesn’t yet have the money for that. Running a single eight-person lab costs between $2.8 and $3.8 million, depending on what kinds of supplies and equipment the work they are doing requires. About half that amount goes to salaries and benefits.

What $15 million can buy

What that means, in funding terms is that if we took all the money available for NET cancer research in the US–that $15 million we take about above–we could fund about four full-time labs.

But we don’t get to spend all of that money on basic research. Drug companies won’t pay for a drug trial until they are fairly certain that trial will be successful. Phase 1 trials–and many Phase 2 trials–have to be funded from that $15 million as well. Even a small trial can run to $3 million.

Increase the cash, increase research

Needless to say, we can run a lot of trials and fund a lot of research labs with $1 billion a year. But all that money has not 100 percent cured breast cancer or lung cancer or prostate cancer–nor even come close to doing so.

If we want to really move out of the Dark Ages of NET cancer care, we need to find a lot more money for research than we are currently coming up with. Regardless who wins the election next week, we can’t count on much from the federal government. We need to figure out how to raise far more private money than we currently do.

Live slicing of NET cancer tissue provides a new window into the disease. Both the equipment and people to do that kind of research costs significant money.
Live slicing of NET cancer tissue provides a new window into the disease. Both the equipment and people to do that kind of research costs significant amounts of money.

One trial could be NET cancer key

awareness, Goals, Jane, Marketing NETs, NET Cancer Awareness Day/Month, NET cancer experiences

The polio vaccine trial

I lived in Pittsburgh, PA in the 1950s. I remember a summer when we were not allowed to leave the yard. I remember standing in line for the first mass inoculation with the Salk the polio vaccine. My parents knew my brother, sister, and I might get polio from it. They took that risk.

…our most important resource…

Today, polio is a nearly dead disease in this country–and in much of the world. It is dead because people were willing to spend the money to find a solution to it–and others were willing to put their lives–and their children’s lives–on the line to prove that solution worked.

One man’s trial

That drive started because one man decided to do something about it. He wasn’t a scientist. But he knew first-hand about polio because he’d survived it and it’s aftermath. He could not stand without braces. He spent most of his remaining life confined to a wheel chair.

They took that risk.

He started a little charity he called The March of Dimes because all he wanted was one dime from every American for polio treatments and research. He did a lot of other things in his life. He guided the United States through the worst years of the Great Depression and World War II.

A personal trial

Laying the groundwork for the end of polio is something we forget about Franklin Delano Roosevelt. He died years before Jonas Salk developed his vaccine. He died years before I stood in a line waiting to be injected with an experimental fluid designed to protect me from the disease.

He wasn’t a scientist…

What I remember most vividly was how big the needle looked–and how scared I was of it. I didn’t know what polio was. I had never known anyone who had it. But I knew my parents had kept us all in the yard for weeks one summer because some people in town had caught it.

The first time my universe changed

Years later, I met a man who had  polio in his youth in the days before the vaccine. He walked with the aid of a cane and a crutch. His one good leg dragged the other up the stairs and down the hall to his classroom every day.

I didn’t know what polio was…

The universe changed for me and many others because of a single trial of a single drug in a time I can barely remember. That trial meant I would never get polio–and that no friend of mine would ever get it. It’s why I never hesitate when someone asks me to get involved with a scientific trial–even when it puts my life or health at some kind of risk.

Jane’s personal trial

Jane shared that attitude for reasons of her own. She knew she was in serious trouble when she heard the diagnosis. She quickly learned she had cancer so advanced she was not likely to live long. There were no trials she qualified for.

That trial meant I would never get polio…

So she told her doctors to learn everything they could from her in every way that they could. She made sure I understood precisely what she meant by that. She wanted to beat NET cancer–but if she couldn’t do that and live, she wanted to make sure her death would help others with the disease–and help researchers find a way to beat NET cancer once and for all.

Our most valuable resources

There are lots of things we need to beat NET cancer: We need more doctors, researchers and lab techs; we need more labs doing both basic research and the translational research that turns that basic research into new drugs and new treatments; we need greater awareness among both doctors and the general public; and we need the cold hard cash that pays for those things.

She wanted to beat NET cancer…

But we need more than scientists and donors. We need patients and caregivers who are active participants in both treatment and awareness building; we need people willing to tell their stories beyond patient forums and support groups; we need blood and tissue samples; and we need people willing to take the same risks my parents took with the lives of their children–and their own.

The power of one trial

My wife killed her NET cancer the only way anyone with an advanced form of the disease ever has: she died and took it with her. But the way she died created new knowledge that has extended and improved the lives of other NET cancer patients. Some of you reading this are the unknowing beneficiaries of that knowledge.

…we need more than scientists and donors.

If we are going to kill NET cancer, none of us can sit on the sidelines, whether we are patients or caregivers. Awareness won’t happen by itself. Cures won’t happen without people willing to take part in trials. In the fight against NET cancer, our most important resource–fair or not–is each other.

There was no trial Jane could take part in, so she found her own way to move the science forward.
There was no trial Jane could take part in, so she found her own way to move the science forward.

Patients too young to let dreams die

awareness, Carcinoid/NET News, Goals, NET Cancer Awareness Day/Month, Treatments

Dreams of a future die

Jane was too young to die.  Jane was 56. I was 58. We were preparing to leave teaching to spend time with each other. We planned to write some books. We had dreams.

Things are better than they were in 2010…

We were not done living or learning or teaching or dreaming. Neither are most of the NET cancer patients I meet. They have careers that matter, children that matter, dreams that matter. Instead, most face a years-long struggle against an incurable disease that slowly strips them of their dignity, as well as their energy and purpose.

Dreams still nightmares

We are still in the dark ages when it comes to NET cancer, as Jill Watson so ably points out in her comment on yesterday’s post. We have made progress, but not enough to make a big enough difference,

We have no cure. We have few ways to slow the progress of the disease. We have few ways to improve patients’ quality of life. We still lack any reliable means of detecting the disease early enough to make a curative difference.

Dreams of greater awareness

Most primary care doctors still have never heard of NET cancer. Too many of those who have, think of it as, “a good cancer to get.” They see it as slow-moving and tout the idea you can live for years with it. They don’t experience what those years can be like.

Too many oncologists know too little about the disease as well. The things they know are what they heard in medical school. They’ve rarely actually seen a case and are equally rarely up on the latest research or new standards of care.

Changing reality

But 2010 really was a turning point in the treatment of NET cancer. In June of that year, the FDA approved two new drugs–everolimus and sunitinib–for pancreatic NET. Those were the first new drugs approved for NET cancer in nearly 20 years. Those drugs have since shown an impact on other forms of NET as well.

Sandostatin–the month-long form of octreotide–would soon be joined by lanreotide, reducing octreotide to a mid-month rescue shot for many patients. One of the worst parts of my day was watching Jane inject herself in the belly with octreotide. For many–though not all–patients, those  days were drawing to a close.

Moving from dreams to reality

Based on a Phase 3 trial, telotristat etiprate should receive approval in the next few months. It also addresses NET cancer symptoms and seems to slow the progress of the disease for many patients.

While for patients in Europe–or those with the means to get there–PRRT had been an option for many years, trials of that radiation treatment had not yet begun in the US when Jane died. The successful completion of those trials in recent months should bring FDA approval shortly for an even better form of that therapy. Again, it doesn’t work for everyone–and is in no way a cure–but its impact on quality of life for many is significant.

Delaying tactics, not cures

Patients with other forms of cancer had tried liver embolization in 2010, but no NET patients had. Today, for those with liver mets, bland, chemo, and radiation embolization therapy have become fairly common–and fairly successful. But, again, not for everyone.

To patients and their families, none of those things is enough. Each improves quality of life. Each increases longterm survival. None of them represents a cure. Nor do the early returns on other therapies in the works.

Diagnostic dreams could fuel a cure

We do have one therapy that offers a chance of a cure: early surgery. But it is rare the tumors are found early enough for surgery to do anything more than what the other therapies do: extend life and improve the quality of that life. In 2010, we had no decent means of detecting the presence of the cancer before it reached an advanced stage.

Today, we are a little better. Jane’s tumors were invisible to every scan her doctors did before the tumors exploded into her liver. Within two years of her death, the PET octreoscan–using octreotide as a contrast agent–made many tumors more visible. Recently completed trials of the Gallium-68 scan are even better.

Dreams of a simple test

But for those tests to reveal the tumors, a primary care physician has to know enough about NET cancer to know to order those tests. What we really need is an inexpensive drug test that could become as routine as the test we use to check for prostate cancer. That kind of test would be a game-changer.

None of this offers any real solace to those fighting the disease at this moment. As Jill points out, the slow pace of getting an idea from the lab to every patient’s bedside is agonizing. But things are getting better. There is far more in the pipeline than there was in 2010. And every slowing of disease progression buys time for patients to get to that next treatment.

Tomorrow is coming

But there needs to be more. That can’t happen without more doctors, more researchers, more lab space, and more NET cancer centers–all of which requires more resources than we have now.

Tomorrow, we’ll look at what resources we had compared to what we have now. Things are better than they were in 2010–but not as good as they need to be.

One of my dreams is that some day no one will place a stone like this in their garden in memory of someone who died of NET cancer.
One of my dreams is that some day no one will place a stone like this in their garden in memory of someone who died of NET cancer.

 

 

 

 

Simple truths I face–Part 3

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Grief

Simple beginnings

I met with Matt Kulke, Hillary Repucci and a NET cancer patient at the Dana-Fraber Cancer Institute on a muggy day in late August of last year. We’d gathered to talk, not about current research, but about the financial situation NET cancer researchers were facing not only at DFCI, but across the country as well. The topic was a simple enough one.

I will continue to write here…

The patient had an idea for a multi-year, multi-million dollar fundraising campaign that would reach out to regular businesses and others with deep pockets in ways we had not attempted in the past. We began working on an initial kick-off meeting and getting the approvals required from the upper levels we would need to proceed immediately thereafter.

The not-so-simple truth

By mid-October, we had settled on three years and $3 million for the campaign, which we launched on December 9–the fifth anniversary of the last day Jane was conscious. No one knew that until I brought it up in my opening remarks that night. They had suggested the date and I didn’t object because it seemed a symbolically fitting moment.

The topic was a simple enough one.

Since that night, we have raised over $600,000 for NET cancer research at DFCI’s Program for Neuroendocrine and Carcinoid Tumors, negotiated a first-of-its-kind Jimmy Fund Marathon Walk group in support of all the teams and Walkers walking specifically for NET cancer, held a summit for the captains of those teams, done an extensive photo shoot in the DFCI NET cancer lab, and worked on a  slide show and presentation we can take on the road to tell the Program’s NET cancer research story and why it matters that we hope to put the finishing touches on this week.

Simple realities

The simple truth is that all of those things have chewed up both time and emotional energy that normally would have gone into other NET cancer projects–like this website. I’ve slowly realized this spring that, much as I’d like to do everything, I can’t.

…a symbolically fitting moment.

Much as I’d like to spend all day every day working on NET cancer, I can’t do that either. It isn’t healthy–for me or anyone else.

Simple emotional needs

I need time to mourn. Nearly 66 months after Jane’s death I know that too much of this house looks like a shrine to the couple we were and the person she was. Last summer, I replaced all the furniture in the living room. I took down the photo collages of her I had hung on the walls after her death and began putting up artwork that is more reflective of the person I am now than the person I was then.

…much as I’d like to do everything, I can’t.

The result is I find myself living largely in that room. I use the kitchen, where I have made the second most changes, to cook in and to eat in. The only times I use the dining room are when I have large groups in for dinner or to work on a project. I sleep in the bedroom, but I had to move it before I could really sleep at all, and still have great reluctance about going in there. Our former bedroom has become a collection point for odds-and-ends I don’t know what to do with. Environment, it appears, really does matter.

Physical reality

I need time to exercise my body as much as my mind. I work on the landscaping around the house every day. I’m gradually transforming the yard into a bee, butterfly and bird sanctuary of gravel paths and flower and vegetable beds. I do everything there by hand–one shovelful, one wheelbarrow-full at a time. The transformation is painfully slow, but sometimes I find myself sitting in the midst of what is finished and discovering a peace I have not felt in over six years–the time before Jane fell ill. In truth, the sanctuary is as much mine as it is the birds’ and insects’.

I need time to mourn.

And I walk. I go for walks in the city through quiet neighborhoods and busy streets. I walk through local woods and fields and along the beach in the late afternoon. Part of it is I know the yard work alone won’t prepare me for the 26.2+ miles of the Jimmy Fund Walk on September 25–and that is a priority. But the walking gives me a chance to clear my head and explore the person I am becoming. It is a meditation that does more than anything else to remind me that I am a human being with needs that go beyond NET cancer or politics or the emotions of loss.

Simple truths emerge

The simple truth that emerges out of all of this–including Parts 1 & 2 of this series–is I need to rethink what is going on here and how best to address the ongoing needs of both patients and caregivers. I’ll need some time to do that but there are some things I can begin fairly quickly. The first of these is to clear out and update some of the sections I’ve ignored entirely over the last year. There are, I suspect, links that no longer go anywhere, for example; and the calendar is completely out of date at this point.

…one shovelful, one wheelbarrow-full at a time.

The simple truth is I need your input about what you need and want to see here. There are basic things– links to foundations, links to support groups, links to NET cancer programs–I know need to be here. But do the things I write here need to be supplemented with other kinds of topics than we currently provide? What do you need that you can’t get somewhere else? Are there other blogs we should be linking to?

The need for other voices

The simple truth is I need other voices beyond mine in this space. As I said in an earlier post in this series, my experiences with Jane during her illness and my own in the aftermath of her death are closing in on six years in the past. Yes, I’m still involved with patients, but not in the way I was with Jane. My role with doctors and researchers is also changing–and will continue to evolve as I move forward with what I am doing with the “3-in-3” campaign.

…some things I can begin fairly quickly.

The simple truth is we need more people to write about their experiences as lay caregivers, as doctors, as nurses, but most especially as patients. While there is great truth to the idea that if you’ve seen one case of NET cancer, you’ve seen one case of NET cancer, that doesn’t mean those patients and caregivers don’t have things to say that others facing this disease don’t need to hear–or won’t find useful.

A simple request

I will continue to write here, but I am also perfectly happy to serve as editor for those with things to say to this audience. Building and maintaining a blog or a website is not something everyone has the time or energy for. We have a good-sized audience here that is hungry not just for the latest research, but for the experiences of other patients and other caregivers.

…we need more people to write…

It’s time we made changes here to do that.

Attracting bees can be simple with the right flowers. Attracting donors is not always that easy.
Attracting bees can be simple with the right flowers. Attracting donors is not always that easy.

 

Simple truths I face–Part 1

awareness, Goals

Simple truths at the beginning

Regular readers of this blog, regular users of this site, will have noticed I have written nothing, changed and updated nothing, here since March 10. I have faced some bitter and simple truths in the intervening time that have caused me to rethink what I am doing here and elsewhere.

These are all simple truths.

When I began doing this in the fall of 2011, the landscape of NET cancer was very different than it is now. There were few patients sharing their experiences. Those who were, shared them on their personal blogs. The major foundations were supplying what little scientific information was coming out but did little–it seemed to me–to tell patient stories.

Simple truths of what was

Much of the writing on the science was not very lay-person friendly, either. The language was dense “doctorese” and often difficult to follow.

I have faced some bitter and simple truths…

There were no lay-caregiver stories. Husbands and wives of NET cancer patients were too busy taking care of their loved-ones to be writing about what they were experiencing. And if that loved-one died, writing about what the experience of care-giving was like took the writer back into an experience that was emotionally very difficult in a time when children and parents also demanded care-giving attention.

Simple truths of support

Then, in very short order, two of the best, and most widely read, patient writers died. I tried to fill that gap as best I could by telling Jane’s story in–at times–excruciating detail.

There were no lay-caregiver stories.

Finally, there was the problem of emotional support for patients. While there were several regional groups holding face-to-face meetings, large numbers of patients really were on their own. It seemed to me one solution to that was an online place patients could talk with each other about what they were experiencing–and where caregivers could do likewise.

Learning new simple truths

I set out to try to offer solutions to each of these problems on this website, while equally working to try to solve the funding problem for NET cancer research–a problem that very much remains, despite good news on several fronts over the last year.

I tried to fill that gap…

My effort to create an online support group crashed and burned almost immediately. We collected infinitely more spam than patients. Privacy was a major concern I had no way to address. Fortunately, others had similar ideas and created private Facebook groups that do a better job than I could have even if everything on this site had worked perfectly.

More difficult simple truths

My patient and caregiver experience threads were based on what Jane and I had experienced over the course of our life together. Over the last nearly five years, I’ve recounted as much of what she experienced as a patient as well as I could. But I have never been a patient and I worried constantly about whether what I was relating was true–or merely my version of the truth. Many patients have said my words have the ring of truth to them over the years, but as treatments evolve, experiences have begun to change.

We collected infinitely more spam than patients.

In addition, we now have a new group of patient writers who articulate their experience far better than I can. They reach a broader audience today, as well–one of them has attracted more readers in the last 18 months than this website has attracted in almost five years.

Missing simple truths

Other websites regularly chronicle the stories of other patients. The patient story is being told more and more broadly and frequently in the mainstream media, as well. That piece of the NET cancer story is being far better told than it was when I started this–though there is still a distance to go.

…experiences have begun to change.

The caregiver story, though, still needs greater attention than it gets. I’ve told my story in many different venues but, like Jane’s story, I’m not sure how valid parts of it are anymore because it lies in an increasingly foggy past. While pieces of my experience remain vivid–down to the exact words and facial expressions–I worry how much of the story I’ve romanticized at this point in my own mind.

Changing simple truths

While the science has changed the patient experience, I’m not sure what the caregiver goes through emotionally has changed very much. One of our closest friends has been diagnosed recently with a life-threatening disease–not NET cancer–and I find our small circle of close friends experiencing many of the same issues I did during Jane’s last days as we try to help him deal with what he is facing–and what we are facing. It has certainly brought back many of the emotions I felt in the wake of Jane’s diagnosis–and reopened many of the wounds I wanted to think were well on their way to healing.

…I worry how much of the story I’ve romanticized…

Still, I am not sure how much more I have to bring to narrating the caregiver experience. Does another piece of writing recounting the day Jane was diagnosed really help anyone better understand what that is like than the other four pieces I’ve already written on it? Will reliving the last day of her life and committing those thoughts to paper, again, be of use to anyone?

Simple truths of healing

I don’t know. What I do know is how hard it is to heal when one is constantly exploring and probing that wound in search of understanding for myself and others. And yet, I also know caregivers need to know they are not entirely alone in what they are feeling and thinking. A fifteen minute conversation with another caregiver made a huge difference in helping me deal with some of what I was going through that I could not talk about with anyone else when Jane was in the hospital.

…science has changed the patient experience…

As a community, we still do a less than great job popularizing the science side of things. We need more and better science writers who can take the complex issues of NET cancer research and put them into laymen’s terms. It is a difficult, but very necessary job–and one I will try to continue to attempt both here and elsewhere.

Unchanged and changed simple truths

The flip side of that is there is still not enough science going on. Last week, I was at the NET-RF conference in Boston. One of the speakers pointed out that nearly every NET cancer researcher in the US–and a substantial number of European researchers–was in the room. It was not a very big crowd.

…caregivers need to know they are not entirely alone…

The good news was not all of them had hair as gray as mine. There are a number of good young researchers taking on this cancer–as well as the household names we all know and love. I am marginally less concerned than I once was about who was going to take over as the prime movers in the field aged and retired.

Difficult simple truths

And then there is the money and resources problem. Despite the influx of nearly $8 million of new money for research this year, the amount of money available  still does not amount to a rounding error on the $660 million the US government alone spends on breast cancer research. Assuming we raise roughly what we raised nationally last year in addition to the new money, we will have about $15 million to work with. But for all that seems a princely sum after years of poverty and neglect, we are far from having enough to do all we need to do.

It was not a very big crowd.

The number of NET cancer centers remains too small, as well. We are now diagnosing about 16,000 new NET cancer patients a year in the US. Researchers now believe there at least 200,000 undiagnosed patients living in this country–to go along with the 110-120,000 diagnosed patients.

Simple truths for the future

Too many of those patients do not have easy access to NET cancer specialists–and that problem is likely to continue to grow. The need for Walking with Jane, then, still exists, though perhaps not in precisely its current form.

…we are far from having enough…

These are all simple truths. But there are other simple truths that shape my reality. Some have to do with NET cancer. Others have to do with the other pieces of my life. Each of those simple truths have an influence on what happens here next.

I’ll look at those simple truths and their impact in my next post–a post I hope to write sooner than two months from now.

Jane's death has cast a shadow on my life words cannot describe. It is a simple truth--but there are other simple truths.
Jane’s death has cast a shadow on my life words cannot describe. It is a simple truth–but there are other simple truths.

 

 

Form 990 Hell and the numbers it creates

Boston Marathon Jimmy Fund Walk, Fundraising, Goals

Fighting through Form 990

I’ve spent much of the last few weeks girding myself for the particular place in Hell reserved for those of us foolish enough to run non-profits that don’t raise enough money for hiring an accountant to take on Form 990 to make sense. Yesterday, having collected all the paperwork, I took on the eight-hour task of explaining to the state and federal governments exactly what we did last year on the forms of their choosing.

I do what I can with what I have…

I don’t like numbers. I’m one of those people who, even with a calculator, can’t add up a column of figures and get the same sum twice in a row. I have to triple check everything. Even then, I find mistakes. At one point yesterday, I had a $205 mistake–somewhere. Then I realized that while I had put what we paid the Commonwealth on the form, I’d forgotten to add that figure to the final expenditures at the bottom of the column.

Digesting Form 990

In the end, everything balanced to the penny. There are still signatures to get and checks to write–and I’ll check the math one more time before I pack everything into the envelopes and send them off. At some point in the next few weeks, I’ll post the forms here, as well. It’s what’s called transparency–which means, “I think you have a right to know–and be able to find easily, if you want that knowledge–what comes in and what goes out.

I don’t like numbers.

But I’ve had to read through more than a few state and federal forms–and to be honest, they are not designed to be lay-people-friendly. At least, that’s my opinion. I understand why the forms are set up as they are. If you have hundreds to review, it’s nice to have a standard form where you don’t have to think after a while about what this line is about because you’ve read it so often you just know what that figure represents.

Why I summarize Form 990 here

It’s like a multiple choice or fill-in-the-blank test: eventually, the review becomes pretty simple. And for an accountant with hundreds of these to fill out, the forms make that job simple, as well.

…everything balanced to the penny.

You, however, probably are not going to review enough of those forms to get to the speed where that works for you. So I am going to reduce what is on the twenty-odd pages of forms to a simple narrative that hits the highlights.

Form 990: dollars and cents

While 2015 was not as good a year for fundraising as I’d hoped, it was still the best year we’ve had in our four-year history. Last year, we raised $23,793.88. That brings our four-year total to $75,431, in round numbers, more than two-thirds of it from small donors.

…a simple narrative that hits the highlights.

We made donations of $23,366 last year. The lion’s share, $12,608, made its way to the Walking with Jane Dybowski Fund for Neuroendocrine and Carcinoid Cancer at the Dana-Farber Cancer Institute through the Boston Marathon Jimmy Fund Walk. That money generated another $7500 in matching funds that went directly to my Walk from an anonymous donor. In total, that DFCI fund took in about $77,000 last year for NET cancer research.

Form 990: More charitable expenses

The second biggest chunk of the money we raised last year went to the American Cancer Society through the Relay for Life of Greater Fall River. That $6258 went to unrestricted funds at ACS for general cancer research and patient support services. We don’t get to restrict how that money is spent. Our team took in about $1300 more than is reported on Form 990 because the money was donated to our ACS team website rather than the non-profit and never passed through our hands.

…we raised $23,793.88.

The final charitable expenditure was $4500 for the Walking with Jane Scholars program at Westport High School. After Jane’s death, I set up a scholarship in her memory at the school we both taught at for graduating seniors planning to enter the medical or science education fields. It is a four-year scholarship. I, personally, make a donation to Walking with Jane each year to cover the cost of those scholarships. I do add that to my charitable deductions.

Form 990: Where your money didn’t go

We spent $205 on bringing us up-to-date with the state in terms of the fees they charge to register and supervise non-profits. I picked up the tab for those personally, though I had to put the money in the Walking with Jane account first, since the state requires the fees be paid on a corporate check.

We made donations of $23,366…

You’ll notice we pay nothing in terms of salaries, travel expenses and the like. All the work is done by volunteers. If I want to go to a conference, I pay for it. If we need envelopes or stamps or pamphlets or stationary, that’s on my dime as well. I don’t take those things off on my personal taxes.

My bottom line

I want whatever you donate to go into research and helping patients, not into routine expenses, state fees, travel, salaries or consulting fees.

…that’s on my dime…

Next year, we will be cutting back on what we do for the American Cancer Society. We’ve decided to sharpen our focus even more on NET cancer–and since ACS will not allow us to focus what we raise in that way, we will move our efforts more toward those who do.

Defining our role

It’s not that other cancers don’t matter–they do. I’ve lost too many friends to too many forms of cancer not to be concerned about the larger issue as well. But we don’t raise enough money to have a real impact on more than one cancer–and, honestly, we don’t raise enough to have a substantial enough impact on NET cancer to suit me. That would take millions–perhaps tens of millions.

I want whatever you donate to go into research…

Unfortunately, I am not wealthy. Unfortunately, I don’t know very many people who are. I do what I can with what I have–and hope that inspires others to do likewise.

This is the face of a man who, in writing this piece, discovered another math error on Form 990 he has to to go fix. Have I mentioned how much I hate working with numbers recently?
This is the face of a man who, in writing this piece, discovered a transcription error on Form 990 he has to to go fix. Have I mentioned how much I hate working with numbers recently?

First NET Cancer Walk Team Summit

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

The NET Cancer Team Summit–An overview

The captains of three of the major Jimmy Fund Walk NET cancer teams held a summit in Newton yesterday morning about ways to support each other’s efforts and to discuss plans for the time between now and the Walk. It was the first of three meetings I had on NET cancer fundraising efforts yesterday. The three teams represented were NETwalkers Alliance, Shuffle for Dana-Farber, and the Zebra Divas. (I can’t post links to the other two teams as they do not yet have their pages up.)

We did not, ourselves, call the meeting a summit at the time. It was a phrase that occurred to me as I headed into Boston for the other two meetings. It certainly was that. Together, those three teams raised close to $130,000 last year and fielded over 130 walkers. Each group has significant plans for the year ahead with the potential to double both of those numbers–or more.

What I sent this morning

What follows is an edited version of what I sent my fellow captains this morning. It does not discuss the details of the meeting–I didn’t take the kinds of notes that would require because part of my role was to carry some questions to the people at Dana-Farber Cancer Institute about how best to facilitate that growth. Rather, it answers the questions raised at that meeting that I took forward into the other meetings–and underlines the role I see myself filling in this newly constructed group of teams with similar interests–given my role in 3-in-3: The Campaign to Cure NET Cancer—as well as captaining our NETwalkers Alliance team–and the  Jimmy Fund Walk teams’ role in that effort.

I hope, first, that those of you who are considering taking part in the Boston Marathon Jimmy Fund Walk will consider either joining one of these teams or forming your own team to join our group. If you have a team that is already centered on NET cancer, we would love to have you join us, as well. Second, those of you who have NET cancer programs in other parts of the country may find in the results of this summit a useful model for your own fundraising efforts.

Some final notes

The bottom line is, we can only climb the summit of curing NET cancer by working together to support each other’s efforts. That is true in the laboratory as well as in fundraising and raising awareness.

My edits have expanded some items to provide background information that was clear to those in attendance but won’t be to those who were not present; and I have eliminated some items and pieces that were internal bookkeeping or extraneous to the central issue of the Walk.

Reporting what I found

Dear friends,
First and foremost, thank you all for meeting with me yesterday. I came away with a number of good ideas and some recharged batteries. I hope all of you did as well.
I won’t recap everything here that we talked about yesterday. People took good notes of their own. My purpose in writing, beyond thanking you, is two-fold: first to answer the questions that were raised yesterday that my later meetings provided answers to; and second, to underline my availability for whatever you need me to do.
Let me deal with the questions first.
  1. We discussed creating a #cureNETcancernow group to which each of our individual teams would belong and whose funds would all go to the Program in Neuroendocrine and Carcinoid Tumors at DFCI. This would help us avoid the losses that always seem to come when a team changes its name and eliminate the rebranding efforts required by those moves. Zack Blackburn, the head of the Walk and I met late yesterday afternoon. He sees no problem with what we propose doing. He will set up the group and put the team names and links under that group–as well as on the individual list of teams. All money raised by teams affiliated with that group will go to the NET cancer program. Each team will still have to fill out the one-page declaration and set a $10,000 goal, but that $10,000 will be a soft goal for our purposes, since the group as a whole will clearly raise more than enough to cover any team that falls a bit short.
  2. Our NETwalkers Alliance team was a three star Pacesetter. As such, we are entitled to a free business card printing branded by the Walk that can be placed in various places as a recruiting device. I’ve asked Zack to use our NETwalkers Alliance cards for the #cureNETcancernow group and to include links for all three of the teams currently in that group on those cards.
  3. Zack and I talked at length about ways to do outreach for other NET teams and individuals. There is no way to cross reference patient and Walker lists because of confidentiality issues. However, Zack suggested they could do a survey to ask why people are walking and either suggest at the time teams that exist in these areas or do a follow-up note making people aware of those teams/groups. This would help them link up individual walkers with teams in their area of interest, helping all teams, not just our teams.
  4. The Walk team has assigned someone to work on the overall recruiting issue. I’ve volunteered to work with her on presentations to researchers and doctors in the Program, as well as to people in the support group—and anyone else she needs me to talk to.
  5. The minimum amount to encumber funds is generally $10,000. As I have noted above, for teams affiliated with our group, that will be a soft number.
  6. I will underline here that the only time I am not available to be at your events is when I am running one of our own.
I do want to underline a couple of things I said yesterday about how I see my role in all this.
  1. From the Walk standpoint, my job is to help everyone, on every NET cancer team—and anyone else walking for NET cancer. That means helping with recruiting—whether that means writing letters, designing posters, working on websites and Walk Pages, giving speeches or talking with people one-on-one or in small groups. It means helping people to develop fundraisers and find knowledge support when I don’t know how to do something myself. And it means attending and supporting whatever events get put on whenever I can. With that in mind, I will make the details of everything my own team is involved with as well as my individual efforts available to everyone.
  2. My plan is to try to meet with every team and every NET cancer walker at the start points, the finish line and/or at after-party events. We may need to figure out how to get me back to Hopkinton afterward, but we’ll cross that bridge when we come to it.
  3. I will help communicate the group needs to the Walk and the Program folks. But I don’t want to supplant your efforts with them. Rather, I want to amplify and support what it is we are trying to do and facilitate rapid communication on issues of concern.
  4. I want this disease dead, and I will do whatever is necessary—short of selling my soul—to make that happen.
If I’ve missed anything I said I’d get back to you about, let me know. And if you’ve thought of other things in the meantime, let me know those, too.
Would there be value in another meeting at some point between now and the Walk? I certainly think a meeting shortly after the Walk—though not that day–would be useful to talk about things that worked, things that didn’t and what we want to do in 2017.
Again, thank you all for your efforts.
Pax et lux,
Harry
What started with a simple idea and a logo keeps growing. Yesterdays's summit was the latest in what seems an infinite number of steps in my personal quest to kill NET cancer.
What started with a simple idea and a logo keeps growing. Yesterdays’s summit was the latest in what seems an infinite number of steps in my personal quest to kill NET cancer.

Building more research from $15 million seed

Boston Marathon Jimmy Fund Walk, Carcinoid/NET News, Fundraising, Goals, NETwalkers Alliance

An influx of cash

Fifteen million dollars sounds like a lot of money. And yesterday’s announcement by the NET Research Foundation of a grant in that amount, spread over three years, from the Margie and Robert E. Petersen Foundation, is huge news. It represents the largest single donation for NET cancer research in history. In combination with the federal SPORE Grant announced for the University of Iowa, those two pieces of new funding nearly equals the amount of money raised and spent on NET cancer research last year from both federal and private sources. Assuming nothing changed in terms of private giving and NCI funding, NET researchers would see $15-16 million to work with next year.

We must, as a community, rise to this new challenge.

But we can’t count on that being the case–especially given that National Cancer Institute support for NET research is actually dropping. The danger here is that we all look at that big chunk of change and don’t push as hard. Instead, we need to seize this event and make it the starting point for our own ice-bucket challenge moment. We need to do more than strive to match last year’s numbers of $8-10 million. We need to try to double that amount above and beyond this sudden influx of new money.

Transformational moment

Ron Hollander, the director of the NET Research Foundation, called the Petersen Foundation Grant “transformational” and I called it a “game changer.” And it is both those things. But to take advantage of that grant’s full potential, we all need to make an increased commitment to do whatever we can to help.

…we need to seize this moment…

I say that with the full understanding that many patients and their families are facing difficult financial times. There is nothing cheap about the treatments we have for NET cancer. Too many people face enormous monthly co-pays that leave them choosing between food on the table for their families or the medications that make life bearable. Some are losing their houses as a result of having to make those kinds of choices.

The restraining issue

But those of us in better financial shape do need to do what we can–both for our brothers and sisters in need and to support the ongoing research that we can hope will lead to a cure. Neither one of those things is an easy task–and I have no good answer to the issues the cost of treatment raises.

Too many people face enormous monthly co-pays…

What answers I do have to those issues require political lobbying work that Walking with Jane’s non-profit status prevents me from raising here in any detail. But it is abundantly clear that we cannot rely on charities or churches to solve that problem. If we could, I would not read the daily litany of those whose finances this disease, among so many others, has ruined.

The research campaign side

On the research funding side, there are things Walking with Jane and other regional, national and global NET cancer groups can do. I can’t tell any other group what to do with its efforts in this regard. But I can set a clear path for Walking with Jane and for the NETwalkers Alliance Jimmy Fund Walk team I serve as captain for.

Neither one of those things is an easy task…

Over the last few weeks I have thought about the goals for the Walk team. I initially set goals of 100 walkers and $100,000 for the NETwalkers Alliance back at the beginning of January. I picked those numbers because they were nice round numbers. I knew they would be a significant challenge to reach: last year we had but 33 walkers and raised nearly $68,000.

New numbers for new times

But numbers should always have some symbolism to them–and those numbers lack any symbolic quality beyond being even. Estimates of the number of diagnosed NET cancer patients in the US range between 111,000 and 120,000–and the more I think about it, the more I think our team goals need to reflect those patients.

…I can set a clear path…

So, today, after asking key members of our team for their opinions, I am resetting our goals to 115 walkers and $115,000. Those numbers are based on the midpoint of the best estimates available for the number of diagnosed patients. Each walker will represent about 1000 patients–and we will raise $1 in honor of each of those patients.

Accepting the challenge

Reaching those goals will not be easy. But President Obama challenged the nation in his State of the Union Address to undertake a “moonshot” to cure cancer. President Kennedy, in launching the original “moonshot, said, “We choose to go to the Moon in this decade and do the other things, not because they are easy, but because they are hard; because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one we intend to win…”

…numbers should always have some symbolism…

That is very much a sentiment with which I agreed then–and with which I equally agree now. We must accept this challenge, in our time, in our place; we must be unwilling to postpone our efforts; and we must really intend to win. People’s lives depend on our efforts–and we must not let them down.

Other efforts to support research

I’ll also be working to boost the numbers of riders–and the funds raised–by the NET Research Foundation’s Pan Mass Challenge team once it is organized. I may even jump on a bike myself, if I can do so in a way that adds to that event without detracting from our Walk efforts. Those funds go to NET cancer research at Dana-Farber as well.

Beyond that, we need to find a way to get local, regional and national celebrities more involved with our efforts. Each year, for example, I ask local and regional politicians to join us for the Walk. They generally politely turn me down, but I’ll keep asking. At the suggestion of two patients, we’ll try again to get the attention of local sports franchises and the leagues they belong to. An earlier effort in that direction didn’t ultimately go anywhere, but the squeaky wheel is more likely to be heard than the silent one

Making the real effort

But our Marathon Walk must be only one part of the effort. It is just one part of 3-in-3: The Campaign to Cure NET Cancer Dana-Farber launched in December. And that campaign must be just one part of a larger effort, organized in region after region in support of local NET cancer centers and the research they are doing. And all those efforts must be only part of a national effort spearheaded by organizations like the NET Research Foundation and the Carcinoid Cancer Foundation. And finally, that national effort must only be part of a global effort in nation after nation and continent after continent.

We must accept this challenge…

But this must be a sustained effort over as long a period as it takes. We have spent billions of dollars on breast cancer research. We still have no reliable cure for many forms of that disease. What we have learned in recent months about NET cancer seems to indicate that it is perhaps even more complicated than breast cancer. Finding an answer to this riddle will not be easy–and it is unlikely to be cheap.

The end of the beginning

The Petersen Foundation grant has the potential to change NET cancer research in significant ways. But if that potential is to be fully reached we must view it as the beginning of a change in our fortunes–and not as an ending. We must now seize the opportunity that grant creates and exploit it–not only in the laboratory, but in the public arena as well.

…this must be a sustained effort…

We must, as a community, rise to this new challenge. We must do so not only with our money, but with our muscles, our sweat, our minds, and our bodies. Let’s make this year the breakthrough moment we need–and then build on that breakthrough to create the full resources we need to cure this disease.

Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let's ride this horse to support the research we need to have to find a cure.
Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let’s ride this horse to support the research we need to have to find a cure.

Five years: The big picture–Part 7

awareness, Fundraising, Goals, Marketing NETs

Every picture tells a story

Much has changed in the NET cancer picture over the 65 months since Jane’s diagnosis in August of 2010. We have new drugs, new diagnostic techniques, foundations supporting awareness and research with clearer visions and greater support than they had then. We have glimmerings of a better understanding of the disease than we have ever had.

Lives are at stake…

Those big picture changes would not have meant much, however, in terms of Jane’s survival were she to walk through the door today with the same advanced form of the disease. Jane’s heart was too far gone, her liver too involved, her ability to digest her food at a pace that gave her time to absorb nutrients so far gone she was starving to death. Greater awareness of her disease that led to earlier diagnosis would be the only thing that would have helped her–and that remains the case.

Parts of the picture are blurry

There are still far too many doctors who have no knowledge of the disease–or have knowledge that is badly out of date. While our imaging methods are far better than they were five years ago, doctors still have to have a reason to order them. We remain without a simple means of testing for the disease. In that area of the picture, we especially have work to do.

We have glimmerings of a better understanding…

And though we have better means of slowing the disease down, better means of alleviating the symptoms of the disease, we still lack anything to use to cure the disease if it is not detected very early in its course. For now, we must be content with extending life and improving the quality of life for NET cancer patients.

Picture the future

Researchers seem poised to make a series of breakthroughs based on new understandings of the disease and how it works. What will slow or speed those efforts, however, will be the degree to which we are successful in raising awareness of NET cancer and the resources to fund the basic research necessary to understand it well enough to cure it.

…we still lack anything to use to cure the disease…

Every cancer has weaknesses. From knowledge of those we can create cures. But first, we need to find them and understand them. And in NET cancer doing that has proven very difficult.

Leading by example

A little over a year ago, I proposed steps I thought we needed to take to increase awareness and drive increased funding for NET cancer research. Reading those ideas now, I know I didn’t phrase those things very well; I let my ego get in the way in places. I think we all do that periodically.

Every cancer has weaknesses.

Most of what I proposed then I could not undertake on my own. But I felt the ideas were important enough that, where I could, I would try to implement them myself. I’ve always said it is better to lead by example than by words, anyway.

Patients paint their own picture

I recruited some patients to tell their stories on walkingwithjane.org. My understanding of some of the treatments we are doing improved as a result. It’s one thing for me to describe liver embolization, for example. It is something else for the actual experience to be described by a patient. And many patients seem to agree with that concept.

…I let my ego get in the way…

I haven’t found a way to get those stories broader play, but if we are going to create a picture of NET cancer in the public consciousness, it is a thing we have to figure out how to do. I’ve continued to cultivate members of the local press with an eye to trying again one of the things I tried earlier in my work here: putting together a package of stories about NET cancer for NET Cancer Awareness Day.

Regional picture

Walking with Jane has committed to a long-term partnership with the Dana-Farber Cancer Institute. Thanks to the efforts of a patient I had not met before, that organization has launched a major fundraising campaign to support its own NET cancer program.

…patients seem to agree…

We will very much be a part of that effort, which was launched December 9 with a reception and speaking program that began almost five years to the minute after Jane entered her final coma. We didn’t plan it that way. It’s just how it happened. It was a difficult night for me–but I appreciated the symbolism of that moment.

Local picture

Walking with Jane ran a wide variety of events in the year just ended. We did dinners with local twists–and will do more of them. We did a miniature golf tournament rather than one on a regular course because there are so many regular tournaments in our region–and we know so few people who play regular golf. We created a zebra herd for our local Relay for Life to educate our community–yet again–about NET cancer.

We didn’t plan it that way.

We tried to do an audio podcast and created some new PSAs for our YouTube channel–but that was an area we failed in more than we succeeded. We also gave some speeches to local clubs and civic groups–but not to enough. We’ll do more in the future, if we can convince groups to do so.

Imperfect picture

And we worked to create a familial feel to everything we’ve done. We’ve embraced patients and caregivers and researchers and people who, before they heard it from us, had never heard of NET cancer before. I’ve told Jane’s story, but also listened to the heartbreaking stories of others.

 We created a zebra herd…

But there are lots of other things in that plan we have not moved on. The grand alliance of regional NET cancer groups across the globe is still little more than a dream I have no idea where to begin on, though some of us have talked about doing a joint Mediathon next November. Such a move might enable us to go 24-36 hours and truly cover the globe.

Personal Picture

More than any year, 2015 was difficult for me, personally. I’ve written hundreds of thousands of words–mostly about NET cancer and what it is like to be a widower created by that disease. It has not been a pretty picture. Very little about the last five years has been.

I’ve told Jane’s story…

I described it to my Board of Directors this way: I made a vow to Jane and to her doctors that I would do all I could to help find a cure for this disease. I don’t walk away from the disease that killed her–I stick my hand back in those flames every day.

Another view

“Actually,” one of my board members replied, “You don’t stick your hand in the flames–you jump in with your whole body.”

I made a vow…

Each of you reading this does that, too. You are immersed in this battle, whether you are a patient, a caregiver, a widow or a widower. Lives are at stake–and none of us will leave these flames until there aren’t.

Setting up the Zebra Herd at Relay for Life was a time-consuming task even after the bags were made up. It takes a lot of sand--and a long area of track to house 1200 zebras. But it created a picture of the disease and how many it affects.
Setting up the Zebra Herd at Relay for Life was a time-consuming task even after the bags were made up. It takes a lot of sand–and a long area of track to house 1200 zebras. But it created a picture of the disease and how many it affects.

 

Five years: Building resources–Part 6

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Hammering the awareness nail

NET  cancer patients across the world have worked for years to grow awareness of the disease among both doctors and the general population. I was reminded of that by a thank you letter I received this morning for a donation I personally made to the Carcinoid Cancer Foundation last month. They’ve been hammering away at that message for nearly 50 years.

This cannot be about redividing the pie…

I’ve been hammering at it for just five–and I’m about as frustrated by it as anyone can imagine. There has been progress–but not enough. The problem is worse than the popular slogan among patients and foundations: “If you don’t suspect it, you can’t detect it.” The truth is, you can’t suspect something you’ve never heard of–and for too many practicing physicians, that ignorance remains a big piece of the problem.

Awareness limits and builds resources

But lack of awareness, which I tried to address in my last post, doesn’t just have an impact on diagnosing the disease; it also has an effect on our ability to put the pieces together to find a cure. Scientists can’t study something they don’t know exists; people won’t donate money to a cause they have no knowledge of. And even if researchers know about a problem, they can’t do much if there is no money available to fund the research.

…ignorance remains a big piece of the problem.

I can’t speak for other patients and caregivers, but part of me would rather not have known what was really wrong with Jane, given we had no cure for what ailed her. Had she simply died following surgery after a diagnosis of idiopathic right-side heart valve disease, it might have made both our lives much more simple. There is nothing emotionally good that happens when you are told there is no cure for your disease, at least that’s how part of me feels about it.

Limited resources, limited ability

And five years after Jane’s death that is–in most cases–still the reality. We have more ways to slow the progression of the disease, we have more ways to ease its symptoms, but a cure remains elusive. And that, in part, has to do with lack of resources. Because we don’t have the money to pursue multiple avenues at once, we have to choose from among a number of good ideas which one to back–and if we choose the wrong one, there really is no evolving Plan B.

…part of me would rather not have known…

For example, in the summer of 2011, I made a trip to Dana-Farber to tour the lab where they were doing research on NET cancer. They had set up a slide with a NET cancer tumor they had managed to grow in the lab. As I looked at it through the microscope they told me about the tiny cells connected to the main body of the tumor. They explained these were feeder cells–so-called because if you didn’t leave them attached to the newly harvested tumors, the tumors would not grow in the lab.

What we do without

Had we had money to fund the research at the time, we might have explored more quickly what was going on with those feeder cells–more properly called stromal cells. But the pittance we had for pure science was already committed to DNA research on the main body of the tumor. Looking at those cells had to wait.

…a cure remains elusive.

It shouldn’t have had to–any more than any of a dozen other ideas shouldn’t have had to. But when you have not merely limited, but practically no resources to work with, you have to make choices about where your money goes. Like a poor family, you look for where you think you can get the most bang for your buck based on the limited money and knowledge you have. Sometimes, you get lucky; many times you don’t.

The price of limited resources

But for NET cancer researchers, that is the reality. It is a reality that likely has cost more than a few lives–and will continue to cost lives if we don’t find ways to change it–and change it significantly.

Looking at those cells had to wait.

Walking with Jane has not been hugely successful in raising large sums of money. Over the last five years, through teams we’ve organized and donations I’ve personally made, we’ve generated nearly $350,000–most of which went to NET cancer research. (We also sponsor scholarships at the high school where Jane and I worked and at her alma mater, and have a successful Relay for Life team whose money goes to support American Cancer Society programs.)

Every dollar counts

That seems like a goodly sum–and given our size and resources, it is–but compared with what it costs to fund even a small Phase I trial, it isn’t very much. And given the most conservative estimate of what it will cost to find a cure–about $100 million–it isn’t much money at all.

…that is the reality.

But, as I say to potential donors everywhere, given how little we actually spend on NET cancer a year, every dollar counts. For example, I am told my initial commitment to Dana-Farber meant we went from one full-time NET cancer doctor in the clinic to two. My annual commitment was quite small, comparatively.

Eventually, you’re talking real money

Our local fundraisers are tiny. The biggest local event Walking with Jane held last year only raised about $3200. But we did ten of them. And those events inspired people around New England to hold events of their own–leading to $67,800 being raised by the NETwalkers Alliance team for NET cancer research at DFCI through the Jimmy Fund Walk.

…every dollar counts.

In 2016, Walking with Jane will add two more events to its local list and focus nearly our full effort on NET cancer research. That means we will cut back on our commitment to the Relay for Life so that we can devote more time to what really is our reason for being: Finding a cure for NET cancer–and doing it sooner rather than later.

Offering knowledge

We will also offer our fundraising expertise to other members NETwalkers Alliance as well as other teams committed to NET cancer so that we continue to grow the pool of money available for research. And if someone asks us for help outside the New England area, we’ll do that, too. We see a lot of what we have done as piloting ideas we hope others will want to adopt.

Our local fundraisers are tiny.

For now, the majority of our direct fundraising efforts will be directed at DFCI. However, we want to help other cancer centers with NET cancer programs develop more and better local fundraising programs of their own. We can best do that by sharing knowledge of things we have done while continuing to grow our own local capabilities.

Helping NET cancer centers grow

We don’t want to take away from what organizations with national and international reach are doing. Rather, we want to supplement their efforts by helping more regional organizations become better at supporting local NET cancer centers that are really hurting financially. We need to grow those centers so that they do not see reductions in their budgets. One way to do that is to create robust, local groups that can create greater local support–both financially and vocally.

…we continue to grow the pool of money available…

We want our work with 3-in-3: The Campaign to Cure NET Cancer not only to build resources for NET cancer research at DFCI, but also serve as a national–and international–model other NET cancer centers and their supporters can use to further increase funding, awareness and support for NET cancer researchers, patients, and caregivers. If we can inspire even five similar efforts at other cancer centers, that could lead to a substantial increase in NET cancer spending in the US and elsewhere.

Growing the resources pie

But we need to do that by attracting new money. We don’t want to see declines in support for NET cancer research elsewhere as support for these programs increases. Nor do we want to see declines in spending for other cancers. This cannot be about redividing the pie that is already too small–it needs to be about growing the size of the pie. To do that, we need to work together.

If we can inspire even five similar efforts…

A year ago, I made a series of proposals for marketing NET cancer. In the final post in this series, I’ll revisit those ideas and look at where they fit into the next year–and the next five years.

Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.
Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: The Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.