Category Archives: Boston Marathon Jimmy Fund Walk

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.

 

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.

DFCI’s NET cancer difference-makers

Boston Marathon Jimmy Fund Walk, Fundraising, NETwalkers Alliance

A surprising day

Someone posted on one of the NET cancer support groups yesterday that they had been doing some research and were amazed at how much of what exists is connected to the doctors at the Dana-Farber Cancer Institute in Boston.

…I’ll log hundreds of miles in training.

I work with some people at DFCI pretty closely. I do a lot of fundraising work for them and have put together a couple of pamphlets with their help. But even I was not entirely aware of how much influence DFCI has on cancer research in general, above and beyond NET cancer.

The DFCI difference

I spent most of today at the annual Jimmy Fund Extra Mile Brunch. It reminded me of how important what we are doing with the Marathon Walk and with DFCI’s Program in Neuroendocrine and Carcinoid Tumors is. I was with Ed Benz, DFCI’s president, for an hour before the brunch–one of the perks of being a 5-star Pacesetter. I managed to combine something he said with something else that was said for a mind-blowing factoid.

I work with some people at DFCI pretty closely.

Only 14 new cancer drugs were approved by the FDA last year. DFCI had a major hand in five of them. Think about that. That’s more than one-third of all the new cancer drugs made available last year that DFCI played an important role in bringing to patients everywhere.

NET cancer research and DFCI

Think about this: The FDA just approved Afinitor (Everolimus) for use in lung and gastrointestinal NETs. DFCI played a major role in its development. will likely be approved within the next six months or so–the only completely new NET cancer drug likely to get approval this year; DFCI was the key player in that process. In fact, there is only one new treatment for NET that is likely to get approval this year DFCI was not a key player in–and patients could get access to that trial through DFCI because it was a satellite center for the PRRT trial.

…more than one-third of all the new cancer drugs…

Afinitor, as well as Sunitinib, were already approved in 2011 for pancreatic NET–again with DFCI in a key role.

The human quality

Much of the new basic science on NET cancer is also coming out of DFCI.

Think about this…

But I don’t do the Marathon Walk–or any of the other fundraising activities I undertake on their behalf–based solely on the research they produce. I do it because of the humanity of the people doing that research and the human qualities of the doctors, nurses and support staff engaged in treating NET cancer patients. They are among the kindest and most compassionate people I have met in my life. None of them is trying to win awards for their research. The only reward any of them seem truly interested in is the one that comes from what they do for and with patients.

The gold standard

My gold standard for doctors grows out of Jen Chan, who was Jane’s oncologist. Never mind her patience in helping us understand Jane’s cancer; never mind her call to us shortly after we got home after Jane’s first appointment to talk about options she had come up with since that morning; never mind her willingness to give up a free Saturday afternoon to come to the hospital to talk to me about our options when Jane went into her second coma; how many doctors would put the turkey in the oven on Thanksgiving morning and then leave it and her children in the charge of her husband to come see Jane that morning, not as her doctor, but as her friend?

None of them is trying to win awards…

I have rarely seen that in most of the doctors I’ve dealt with over my life–and especially not very often among the very best at what they do. The people at DFCI do both. And I love them for it.

My DFCI mystery

Outside of New England, no one seems to have heard of the NET cancer doctors at DFCI or the Program they have created. When I read the recommendations of patients from outside the region, I rarely see Dana-Farber, let alone  Matt Kulke or Jen Chan, mentioned. And that’s sad. What goes on there is extraordinary.

And I love them for it.

And why shouldn’t it be? Nationally, the Dana-Farber Cancer Institute ranks third overall for cancer treatment–trailing only Sloan-Kettering and MD Anderson. You don’t get that kind of recognition without excellence in every aspect of what you do.

Walking the Walk

In 225 days, I’ll walk 26.2 miles to support the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Between now and then I’ll log hundreds of miles in training. I’ll spend hundreds of hours working both alone and with the other members of our team to raise money for the Walk; I’ll spend similar hours trying to help others get their own fundraising projects off the ground; and I’ll drive hundreds of miles to support their efforts. I’ve done it before–and I see no reason not to do it again this year–and next year, and the year after that, and the year after that…

What goes on there is extraordinary.

There are lives at stake–and what the doctors at DFCI do makes a difference. Come and help us make a difference.
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: 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.
 
 

NET cancer winter fundraising letter 2016

Boston Marathon Jimmy Fund Walk, Fundraising, Grief, NETwalkers Alliance

(Editor’s note: As I do every year, I am making the following letter available to everyone raising money for NET cancer research, whether for our NETwalkers Alliance Boston Marathon Jimmy Fund Walk team or for a regional event in your area to support some other NET cancer research group. In the latter case, you have my permission to make changes in it to get it to work for your purposes. You can also use it as a model for creating your own fundraising letter. I don’t ultimately care who finds an answer to NET cancer–so long as someone does and it happens sooner rather than later. And, of course, if you’d like to make a donation to my Walk, I won’t object to that either.)

The Letter

Dear friends,

You’d think over five years after Jane’s death I’d have come to terms with that event. Friday night, I bawled my eyes out for close to three hours before I crawled into bed. Saturday morning, I started screaming, “I want my life back” at the top of my lungs. It didn’t change anything, but I felt better afterward.

I like to think I can have my life back anytime I want it: I just have to turn my back on NET cancer, turn my back on all the patients and caregivers I’ve met—and all the doctors and researchers working to find a cure for the cancer that killed my wife. People tell me it is my work against this cancer that holds me back from getting over Jane’s death—that my insistence on being in daily contact with it and those who have it is what prolongs my grief. They may even be right.

I just have to turn my back on NET cancer…

But I can’t un-see the truth of Jane’s 30 years of struggle with sleepless nights and constant diarrhea, nor un-see her final days in that hospital room. I know what every patient suffers. I know intimately what their families will go through–and are going through.

Yes, we’ve made substantial progress in the last five years. We have new imaging systems that make the disease easier to see. We have new drugs and treatments that ease the symptoms and prolong patients’ lives. And we are doing the basic research that will help us understand how this cancer works and how we can attack it. But we still don’t have a cure.

I know what every patient suffers.

So, again this year, I will walk the length of the Boston Marathon route on September 25. Over the last five years, you’ve helped me raise nearly $70,000 that way—every nickel of which funds NET cancer research at the Dana-Farber Cancer Institute. The teams I’ve captained have raised over $180,000 for that purpose—and you’ve played an important role in inspiring that.

I am asking for your help again this year. We have a donor who will match every donation you make by June 30, dollar-for-dollar, up to $7500. And if we get that entire amount, I won’t ask you for another penny until this time next year. If we don’t, I’ll have to write again this summer.

Every dollar makes a difference. Please donate today.

Pax et lux
Harry Proudfoot

P.S. If you’d like to join us September 25, whether for 5K, 10K, 13.1 miles, 26.2 miles–or as a Virtual Walker–you can sign up by clicking here. We want to recruit 115 Walkers this year–one for ever 1000 patients who are living with the disease in the US–and one dollar for every one of those patients. Help us #cureNETcancernow.

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.

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: 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.

 

NET cancer research needs you

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

(Editor’s note: What follows is the letter I wrote this week inviting people to join the NETwalkers Alliance in the Boston Marathon Jimmy Fund Walk on September 25. All the money our team raises goes to NET cancer research. I post it here for two reasons: The first is in the hope that those of you in the Northeast will join us for the walk; the second is to provide a template for groups elsewhere to use in their own fundraising events. You are free to use this letter either as is or in modified form either for the Jimmy Fund Walk or a similar event in your area.) 

NET cancer team letter

Dear friends,

I’ll be in Hopkinton for the start of my sixth Jimmy Fund Marathon Walk in 283 days. I’ll walk, as I always have, in memory of my wife Jane, who died of NET cancer December 10, 2010. And I’ll walk to support NET cancer research at Dana-Farber in the hope that my many friends with NET cancer will benefit from their work.

I’m writing you today to ask you to walk all or part of that route with me September 25 as part of our NETwalkers Alliance team. I’ve punched in some significant goals for this year as we work to support 3-in-3: The Campaign to Cure NET Cancer, which we launched December 9. That campaign aims to raise $3 million in three years for NET cancer research at DFCI—and every NETwalkers Alliance dollar will go to help meet that ambitious goal.

If you’ve followed my posts on walkingwithjane.org this fall, you know just how deeply the loss of Jane affects me emotionally even today. And you know, as well, how determined I am to prevent others from going through what she suffered–and what I deal with now.

I’m already in. I hope you’ll join me.

Many of you have lost people you love to this disease—and none of you needs me to remind you of how that feels. You know intimately the things I try to put into words–and fail to do adequately.

Many of you have loved ones who are fighting this disease right now. You know the daily trials they face too well.

And many of you have this disease. You deal every day with the sometimes debilitating and embarrassing symptoms of NET cancer.

…take concrete steps to change the reality…

Each of us has a reason to do what we can to kill NET cancer. The Walk is one of the ways we can take concrete steps to change the reality for our loved ones and ourselves.

We’re looking to recruit 100 walkers for our team this year and raise $100,000. With your help, we can make that happen. More importantly, we can help change the future for NET cancer patients and their families.

I’m already in. I hope you’ll join me. Register today. If you enter the code word NEWYEAR before January 31, you’ll get a $10 registration discount.

Pax et lux,
Harry

p.s. If you were a Pacesetter last year, they tell me you’ve been sent a separate discount code word you can use.

p.p.s. Please feel free to share this note with others who may be interested in joining us. We need all the help we can get to help spread the word about NET cancer.

Anger and grief fuel my Walk for the Jimmy Fund every year. I do it to raise money for NET cancer research. But no matter what I do, it never feels like enough--and it never alleviates entirely either emotion for very long.
Anger and grief fuel my Walk for the Jimmy Fund every year. I do it to raise money for NET cancer research. But no matter what I do, it never feels like enough.

Five years: WWJ awareness goals and plans

awareness, Boston Marathon Jimmy Fund Walk, Goals, Marketing NETs

Planning matters

It’s hard to set realistic goals or make good plans when you know, as I did five years ago, virtually nothing about the situation you find yourself in. But as anyone who knows me can tell you, I believe in nothing more strongly than setting goals and evolving plans to reach those goals. That no plan survives first contact with reality does not mean planning is worthless. The person who plans is far more likely to succeed in any given situation than someone who doesn’t.

…raising awareness will be the most difficult part…

Two quotes on this subject have guided my life in many ways. The first is, “Those who fail to plan, plan to fail.” You can, if you get lucky, succeed without a plan if your opponent is equally without a clear plan. But if that opponent plans at all–or has come to the field with overwhelming force–you have almost no chance of victory. Cancer, in general, is an overwhelming force–and NET cancer especially so.

Planning in the blood

The second is, “Poor prior planning produces pitifully poor performance.” Poor plans based on poor information are more likely to end successfully than no plan at all, but not by very much. An untrained army will not defeat one that is properly prepared for battle. Ask the French about Agincourt if you have doubts. They had overwhelming force against a small group of highly trained archers and a handful of dismounted knights. Many an English yeoman left that battlefield a wealthy man.

Cancer, in general, is an overwhelming force…

That is how I was brought up as a child and trained as a young adult. It was how I ran my classroom–and how Jane and I fought her cancer. Having a plan does not always mean you win–it just makes it more likely.

Plans start with goals

Our goal is simple: eliminate NET cancer as a fatal disease; create ways to cure it when it happens; and work to prevent it if we can. The third goal is the least pressing of the three, not because it is not important but because we do not know enough about the causes of the disease to take any meaningful action in that direction.

Having a plan does not always mean you win…

Finding a cure–even just finding ways to ease the symptoms–is not something I have the background to bring about directly. Most of those reading this are not doctors or researchers. That does not mean, however, that there are not concrete things we can do to bring about those things.

Lack of awareness

The biggest problem we face is the same one that existed five years ago: lack of awareness of the disease. Currently, the only hope for a cure a NET cancer patient has is early detection–early enough that surgery can deal with a single tiny tumor before it spreads. Right now, most discoveries at that stage are accidental. There is no equivalent of a breast self-exam or a broad spectrum blood test like PSA for prostate cancer.

Our goal is simple… 

Too often, there are no symptoms of any kind until after the cancer has spread well beyond the original tumor. By that time, surgery can at best debulk some tumors and reduce symptoms somewhat. And sometimes surgery is useless.

Impact of awareness

But whether because of increased awareness, better training, improved imaging techniques or some other factor, we are seeing 50 percent more diagnoses in the US than we were five years ago. At about 15,000 diagnoses a year, NET cancer still pales next to breast cancer, lung cancer, prostate cancer, colon cancer or any of a number of other forms of the disease. But the truth remains we have no idea how many people die of NET cancer each year who are never properly diagnosed with the disease.

…sometimes surgery is useless.

Lack of awareness also has an impact on our ability to increase resources for research at every level from basic science to developing treatments. Scientists simply do not enter fields of research they have never heard of. Nor do people make donations to diseases they have never heard of, let alone experienced.

Website awareness

Raising awareness, then, remains one of the crucial things we met continue to work on over the next five years. In Walking with Jane’s case, that means continuing to work on this website so that it increasingly becomes what my original vision for it was: a valuable resource written in plain English where people can come to learn about NET cancer and the various places available where they can get additional information.

NET cancer still pales next to breast cancer…

While I have done a good job on some sections of this site, others need to be updated and expanded. This blog accounts for the vast majority of visits to walkingwithjane.org. But the Resources page is sadly out of date and the Calendar doesn’t get as much attention from me as it needs. Part of the reason for that is the things I do in other areas; there really are only so many minutes in the day. Essentially, that means I need to recruit some help to take on part of what I am doing here and/or elsewhere.

Social media awareness

Last year, walkingwithjane.org attracted 24,444 hits from people in 101 different countries. That sounds like a lot–and it is. But it is small change even in the NET cancer world. For example, the Carcinoid Cancer Foundation website garners 45,000 hits a month. My goal for next year is 36,000–about 3000 visits a month. that means continuing to build audience for these posts, but also redeveloping the other pages on the site.

…I need to recruit some help…

While this and other websites are a major piece of the awareness puzzle, it cannot be the only piece. We need to continue to develop social media. I started an experiment last week with the help of Jillian Emmons, a member of our Jimmy Fund Walk team, to increase the reach of the Walking with Jane Facebook Page. We will try to expand our use of Twitter, Pinterest, and Instagram in the coming year, as well, hoping that those efforts will increase general awareness of the disease among Internet users.

Other avenues

Last winter I produced a pilot for a weekly audio podcast about NET cancer. It did not generate much of an audience, but that may have been because things came up that pulled me away from promoting it very well. It is an idea I’d like to come back to if I can figure out how to streamline the production process and improve promotion.

We need to continue to develop social media.

But both social media and the Internet require an active and connected audience–and not everyone is. Walking with Jane now has two NET cancer pamphlets in production that we need to work to get into doctors’ offices across the country so that we can educate both doctors and patients about the existence of the disease.

Getting the word out

We need to do more with visual media. I’ve produced a number of short PSAs, but we need to create more of them and keep pressing to get them aired beyond the Walking with Jane Channel on YouTube. My hope is to produce one 15-30 second PSA each month aimed at wetting people’s’ appetites for more information about NET cancer–or at least get them familiar with the name of the disease.

It is an idea I’d like to come back to…

Another thing we need to do is get more people to tell their NET cancer stories, whether in writing or on video. That is a task I need to spend some more time thinking about. We tried several different approaches to this over the last five years–but most of what has happened I had very little to do with. Most were cases of accidental offense where a reporter somewhere heard about someone with the disease completely by accident and decided it would make a good story. We need, all of us, to work more intentionally to get those stories out to a broader audience.

Awareness is key

Last year, I was invited to speak to a couple of different civic groups about NET cancer. Here, too, we need to be more active in seeking out opportunities to do those kinds of things. To that end, one of the things I will do in February is send out letters locally, regionally, and nationally to civic and social groups offering to talk about NET cancer at meetings at all levels of their organizations. I’ve also encouraged people at Dana-Farber to speak to more lay audiences when the opportunity presents itself.

We need to do more with visual media.

In some respects, raising awareness will be the most difficult part of what lies in front of us. But it is also the key to both early diagnosis and to creating the resources we will need if we are to find a cure. We’ll need not only to pursue the things outlined above, but continue all the things we have done that have proven successful in the last five years.

In the next part of this series, we’ll consider plans for creating the resources necessary to eventually kill NET cancer.

Our growing Jimmy Fund Marathon Walk team is another way we build awareness of NET cancer. Each year I design a new shirt for our team to use both on the day of the walk and throughout the year.
Our growing Jimmy Fund Marathon Walk team is another way we build awareness of NET cancer. Each year I design a new shirt for our team to use both on the day of the walk and throughout the year.

Five years: Building resources for NET–Part 3

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

Resources 2010

The day before Jane died–when we already knew there was nothing left to do but let her go–Jennifer Chan, Jane’s oncologist, and I had a conversation about Jane’s legacy as a patient. Jen told me that afternoon that what they had learned from her over the four months from Jane’s diagnosis to her death had doubled our knowledge of the disease. Two or three of the things the came out of that knowledge have made a substantial difference in the lives of other patients since.

…curing NET cancer now will become a reality.

But what stunned me that afternoon was I knew pretty much what we had learned–and it wasn’t very much. That statement demonstrated just how little we knew in 2010–and it didn’t take me very long to figure out why we knew so little about a form of cancer first diagnosed nearly 100 years before. Not many people had spent any serious time studying what we then called carcinoid cancer–and their efforts had been hampered by the tiny amount of money available to study the disease.

The search for resources

In 2010, we spent less than $2 million on NET cancer research. The Dana-Farber Cancer Institute had one doctor working full-time on it. Jen was working on it only half the time. The rest of her day was spent on other gastrointestinal cancers. There wasn’t money to do much more than that.

…Jane’s legacy as a patient.

And that problem existed virtually everywhere else in the US. There were pockets that were doing more, but they were few and far between. $2 million just doesn’t buy many researchers or much lab space or much equipment. People were dying as a result–but they were dying quietly and no one was paying much attention.

Increasing resources then

Jane, too, died quietly–but I was determined to make some noise about it, if I could just figure out how to do it. And a chunk of that noise was aimed at creating the resources we needed to make a difference in the lives of NET cancer patients. Raising awareness was one step in that process–but setting an example on the financial side needed to be part of the equation.

People were dying as a result…

So in June of 2011 I signed up to do the Jimmy Fund Marathon Walk. In July, someone I met at the Caring for Carcinoid Foundation (now the NET Research Foundation) told me about their team and that because they raised over $10,000 they could earmark that money specifically for NET cancer. I joined that team immediately.

Building resources

I had no idea what I was doing. I’d never tried to raise money before I’d started doing fundraisers for our Relay for Life teams that spring. We’d managed to raise barely $2500 in the six months between Jane’s death and those events–and it had been exhausting. Now I was going to try to raise money on my own for an event that would take place a good way from where my fundraising base was.

…I was determined to make some noise…

So I set my goal for the minimum–$300 seemed like an awful lot of money to me then–and posted that I was walking the Marathon in September on my brand new Facebook page. In less than an hour, I’d garnered $500 in donations. I reset my goal to $1000, then $1500, then $2000.

The long Walk to resources

Things eventually slowed down, but when the dust had settled, I’d raised about $4500 in less than three months. I raised $10,000 in 2012, $13,000 in 2013, over $15,000 in 2014, and broke $30,000 in 2015. I had lots of help last year as our Relay team turned its full attention to NET cancer after the Relay in June.

I had no idea what I was doing.

In 2012, I took over as captain of the Caring for Carcinoid Team, changing its name to include Walking with Jane–yes, I have an ego. The size of the team shrank–as did what the team raised. In 2013, we were even smaller when three of our team members–and our best recruiter–lost their father to NETs in June. But we raised more money. In 2014, we added another team to ours and grew our own team beyond that. That group raised over $66,000, And while we had a smaller team in 2015, we narrowly beat that number.

Committing personal resources

But in the fall of 2011, I had quietly made another decision. I discovered that Jane’s small pension was coming to me–and it didn’t seem right for me to keep that money for myself. Certainly, I know I will likely need that money someday and that I should be salting it away in the meantime. But it seemed a better investment to put that money where it could do more immediate good.

The size of the team shrank…

So I pledged $100,000 over five years to set up the Walking with Jane Fund for Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. Last month, I renewed that pledge for another five years. It isn’t a lot of money compared with the major donations of folks like the Yawkeys and people who get their names carved on the walls–but that isn’t the point. I look at that donation as seed money that I hope will get others to do what they can–whether less or more than that donation. Every dollar counts.

Creating the resources we need

Because the fact remains that we still don’t have the resources to really go after NET cancer the way we can go after lung cancer or breast cancer or prostate cancer or colon cancer. Last year, with luck, the total raised and spent in the US on NET cancer will be $8-10 million–a great improvement over where we were in 2010, but still far from what it will take to find a cure. We’ll have more doctors, researchers and lab space dedicated to NET cancer than we ever have before, but still far from what it will take to find a cure.

…it seemed a better investment…

Last month, Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors launched 3-in-3: The Campaign to Cure NET Cancer. The plan is to raise $3 million in three years for NET cancer research at DFCI. I gave the welcoming speech and closed the meeting with a call to create the resources to cure this foul fiend of a disease. (All the money raised by both our Walk team and the Walking with Jane Fund will count toward this campaign.)

Building on our resources

As of this afternoon, we have raised $425,000 in less than a month for 3-in-3. But we need to keep that momentum going. More, we need to extend this idea to other NCI cancer centers with NET cancer programs and other NET cancer foundations so that over the next three years we raise nationally $45-60 million so that we can fully exploit all the new knowledge about NET cancer researchers are generating.

I gave the welcoming speech…

In 2011, Walking with Jane raised about $7000 for cancer research–including what we raised for Relay for Life. My goal, at the end of that year, was to double that amount in 2012, double that again in 2013, 2014 and 2015. By that measure, we should have raised $102,000 this year. That amount did not pass through our bank account this year.

The doubling cube of resources

But when I add up what our Relay team raised and what our Jimmy Fund Walk team raised, and what I personally donated to DFCI and the other major NET cancer foundations, we came very close to that mark.

…we should have raised $102,000 this year.

My goal in doing that was to encourage similar increases in resources in other groups over that same time period. I doubt Walking with Jane had much to do with the fact NET cancer organizations raise four times what we did in 2010 today. Walking with Jane simply does not have that kind of reach or influence. Many of us arrived at the same goal, seemingly independently, and took steps to make that happen. And we seem to have done so entirely with new resources–so we are not taking money from other cancers to cure our own.

Critical mass

And the events of December 9 at Dana-Farber convince me we are nearing the critical mass to make #cureNETcancernow more than a simple hashtag for a fundraising campaign; we are nearing the point that curing NET cancer now can become a reality.

…we came very close to that mark.

You can help make it so.

Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015. He ended with a call to increase NET cancer resources.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015. He ended with a call to increase NET cancer resources.

Editor’s note: This is the third in a series of pieces about where we have journeyed over the last five years–and plan to go over the next five. The next part in the series will look at goals for the next five years–and plans for how to reach those goals.