I lost Jane eight years ago. I’m still fighting her cancer. You can help.
The myth of normal
You’d think that after eight years, Jane’s death wouldn’t hurt anymore; that the memory of watching her inject herself every morning and evening with octreotide would have faded; that I wouldn’t have to fight my way out of bed anymore.
I’ll keep riding and walking and making donations…
The truth is something else. You don’t lose a husband or a wife without pain, without creating difficult memories, without taking long term emotional damage. You learn to cope, but you never really get over it—never really get back to normal.
Why I help
People ask me why I’m still fighting to help find answers to NET cancer eight years after any answer we find would do Jane any good. My answer is simple: I don’t want anyone else to go through what Jane went through—and what I continue to go through. I want the day we have cures not only for NET cancer—but for all cancers.
You don’t lose a husband or a wife without pain…
I’m not a rich man. My wife and I were both school teachers. Our students mattered more than our paychecks—more than our retirement. I don’t drive a fancy car or live in a gated community. I can’t write checks the size I’d like to support NET cancer research. I do what I can. I walk the Boston Marathon Jimmy Fund Walk; I ride part of the Pan Mass Challenge; I organize events; I donate what my budget allows.
Any donation will help
I ride with Team Heidi’s Heroes for the PMC. Help me reach my $10,000 goal.
That’s what I ask you to do—what you can. You don’t have to walk 26.2 miles or get on a bike for 50 miles or more. You don’t have to write a check for $10,000 or $1000 or $100. If all you can come up with is $10, that will help more than you can imagine. And if you can do more, I won’t say no. NET cancer isn’t a well-heeled cancer. We still measure what we have for research in millions, not hundreds of millions or billions.
We’ve made some progress. We’re better at diagnosing the disease than we were. We’ve discovered the disease is not as rare as people thought—it’s now the second most prevalent form of gastrointestinal cancer. We’ve found some drugs that slow the course of the disease and ease patients’ symptoms. We have some hopeful leads developed in part thanks to research Walking with Jane has funded through donations like yours.
Help fund a cure
But we still have no cure. Until we do, I’ll keep riding and walking and making donations and writing letters like this one in hopes of inspiring people like you to join us by contributing what they can.
We’ve made some progress.
I really do want to stand at Jane’s grave and tell her, “NET cancer is dead. Your life—and your death—helped kill it.”
Please do what you can to make that happen.
Pax et lux,Harry Proudfoot
Chairman, Walking with Jane
Help us reach our $100,000 goal. I captain the NETwalkers Alliance.
The first $2500 in donations to both my Ride and my Walk will be matched by an anonymous donor, for a total of $5000.
You can click on either the PMC or Jimmy Fund Walk to donate to support either my Ride or my Walk. Every penny from every donation at either goes to support NET cancer research.
I finished my sixth full Marathon Walk in 2018–and my eighth year on the course. This year, I had company on the full course, including Morgan Bozarth and Dan and Julia Hurley. One of my personal goals is to get at least one more full distance Walk in this year.
Thinking about goals
I sit down to review the goals for Walking with Jane and draft new ones every January as part of the planning process. Doing so requires me to look not only at Walking with Jane as an organization but also requires I look at what the other groups involved in the fight against NET cancer are doing.
We need to spread the knowledge…
The reason for that is I see no reason to keep doing something others are doing better. We have limited resources. I try to work on the things that seem to me to have too few resources aimed at them.
Looking around
This year, I decided to zero everything out and start from scratch. I asked myself, “What do we do well—especially better than anyone else? What do we do poorly—or that some other group is doing so well and so broadly that we can step back from it? What are the holes that need to be filled regionally, nationally and internationally? What would I do if I were coming to this work today?”
We have limited resources.
Truth be told, while NET cancer has come a great distance since Jane’s death in 2010, a great deal remains to be done. Yes, patient awareness and support has come a great distance. The Carcinoid Cancer Foundation links patients to doctors and information about the disease at a very high level. Several groups sponsor both regional and national conferences aimed at patients and caregivers that are invaluable resources.
What do we do well?
Research funding has also improved markedly over that period as well. Thanks to generous donations, the NET Research Foundation has begun to establish a broad base of researchers around the world. Globally, there is more research going on than ever before—research we can hope will one day result in cures for NET cancer patients everywhere. In the meantime, that research is turning up ways to improve patient quality of life—as well as lengthening their lives.
Holes to fill
But too many primary care physicians remain ignorant about the disease. Even those who have heard of it often rely on vague memories of the past and know almost nothing about the latest research. It’s not that the resources to educate them don’t exist—it’s that they don’t know where to look.
What do we do poorly?
Nor does the general public have any name recognition for the most part, despite NET cancer being the second most common form of gastrointestinal cancer in the US.
Funding matters
We rely heavily on big donors for both awareness and research funding. Sometimes that money comes with strings attached, pushing researchers in particular directions. That’s not necessarily a bad thing. Drug companies only step up when they see science that is working—and we need to fund translational research that brings the results of basic science to patients who need treatments.
…too many primary care physicians remain ignorant…
But basic research rarely attracts those kinds of donors. We need to develop ways to consistently reach the $25-$1000 donors who together can make an important difference. Walking with Jane has helped spearhead efforts at the Dana-Farber Cancer Institute in that direction. Last year, those efforts created about $700,000—the lion’s share through Boston Marathon Jimmy Fund Walk and Pan Mass Challenge teams.
Lifting more boats
That was all part of a larger campaign to attract both large and small donors to the NET cancer program at DFCI. Over three years, 3-in-3: The Campaign to Cure NET Cancer, raised a total of over $3.6 million.
We need to develop ways to consistently reach the $25-$1000 donors…
We need to spread the knowledge of how to do that to NET cancer centers everywhere. Part of our goals this year is a major push to do just that.
The 2019 Goals
Our 2019 goals are broken down into three areas: Fundraising, Awareness, and Infrastructure. Some of the goals appear in all three areas.
Fundraising Goals
Raise $900,000 in small donations for the Program in NET Cancer at DFCI
Retain and Expand the #curenetcancernow Boston Marathon Jimmy Fund Walk group
Set a group goal of $200,000 and 300 walkers
Set a NETwalkers Alliance team goal of $75,000 and 30 walkers
Set a personal Walk goal of $18,000
Expand the number of riders for NET Cancer of the Pan Mass Challenge
Set a total Ride goal of $700,000
Help the Heidi’s Heroes team reach $250,000
Set a personal ride goal of $12,000
Help NET Walk and PMC teams develop effective fundraising activities
Support efforts by the development office at DFCI to attract and retain large donors
Raise an additional $20,000 to support the Primary Care Physicians NET Cancer Awareness Initiative (Laura Maguire Hoke Fund for NET Cancer Awareness)
Raise $4000 for the Jane Dybowski Scholarship Fund
Help other NET cancer centers develop effective small fundraising events for Walks, Rides, etc.
Write and recruit fundraising articles for the fundraising section of the website and for the Walking with Jane Fundraising group
Awareness Goals
Redesign website in support of the new vision and purposes
Create both and materials for primary care physician conferences
Book and attend primary care physician conferences
Create press releases and pamphlets as needed
Create PSAs as needed
Do 2018 form 990 and post—with past years—to new website
Create a team for Relay for Life
Infrastructure Goals
Complete Walking with Jane office
Update computer system and printer as needed
Design banners for craft fairs and PCP conference booth
Redesign and rewrite website
Maintain and expand social media connections
SnapChat
Others
Create detailed monthly plans for all of the above
I wish my personal landscape involved more time with my hummingbirds and less time trying to help unravel NET cancer. But the good of the many outweighs the needs of the one, as Spock would say.
Changing landscape of NET cancer
The landscape of NET cancer has changed enormously over the last eight years. We had no money for research worth talking about. Too many patients and caregivers had few support systems beyond their immediate friends. Online support groups were mostly small and hard to find. People in the US had to fly to Europe to get the single most effective treatment available.
I can already see the broad outlines forming…
I’ve had little to do with any of those changes beyond wishing for them. Yes, I’ve helped raise or inspire about $4 million in funding for research in that time. I’ve offered some solace and knowledge to a small number of patients and inspired a couple of people to write about their experiences. I’ve tried to lay some groundwork where I could. But what I’ve done and what I wanted to do remain two very different things.
Where I’ve been
Over the last ten months, I’ve done a lot of thinking about what I’m doing—a lot of thinking about what the NET cancer community has been doing.
Honestly, though, the bulk of that effort has not fallen on me. I’ve chaired the monthly progress meetings, made some suggestions, led our NETwalkers Alliance team, and given the occasional speech, But the bulk of the effort has fallen on Hillary Repucci and her team in the Jimmy Fund office.
I’ve done a lot of thinking about what I’m doing…
Still, that effort has taken something out of me. I’ve written less and less for the walkingwithjane.org website, written very little on the grief websites I’m part of, written very little on the various NET cancer support websites. My personal writing has entirely withered on the vine—as has much of my personal life. For eight years, NET cancer has dominated my waking hours—and too many of my sleeping hours as well.
Fighting through the emotions
It has become harder and harder to do more than read the posts in the NET cancer support groups—emotionally harder and harder to do even that. Every patient’s story reminds me of Jane’s, reminds me that we still don’t have a cure, reminds me that every time I’ve seen something that looked promising it has fallen well short of that promise.
…the bulk of that effort has not fallen on me.
Two weeks ago, I lost another person, who’d become a friend, to this vile disease. Like Jane—like too many others—she was diagnosed far too late—died far too young. Each patient’s story strafes my soul; each death reminds me we have not yet done enough. For all that things are better than they were—they are not yet what any sane person would call good.
The unchanged landscape
Eight years ago next month, Jane and I sat in her primary care physician’s office waiting to learn the results of her biopsy. Jane had a blood clot in her shoulder. As a result, we were getting the results of the test a couple of days early. She would spend that night in the hospital. It would be only the second time in almost 21 years of marriage that we spent the night apart. It would not be the last.
Every patient’s story reminds me of Jane’s…
“It’s cancer,” her doctor said. “I don’t know how to tell you this, but it’s a cancer I’ve never heard of before.”
The changing reality
Too many people still hear similar words when they learn they have NET cancer. That piece of the landscape hasn’t changed. Too many patients still have to educate their oncologists about the current treatments for the disease. That piece of the landscape hasn’t changed enough either, for all that it is marginally better than it was eight years ago.
‘…I’ve never heard of before.’
NET cancer is now the second largest form of gastrointestinal cancer in the US in terms of the number of diagnosed patients living with the disease. We now diagnose more than 20,000 new cases every year. Nearly 200,000 people are knowingly living with the disease in this country as I write this. Yet it remains a disease the vast majority of Americans have never heard of. That piece of the landscape hasn’t changed.
And how many people are out there suffering—as Jane did for years—with NET cancer who will never know they had it—whose relatives will be told they died of something else? Too many.
What I want–and why I don’t
I want to stop. I want to sit on my deck and watch the hummingbirds, work on my garden paths, plant flower beds, sit in Jane’s memorial garden and watch the baby bunnies nibble the leaves on the perennials. I want to bake cookies and breads, to write a novel and some poetry, to play chess and learn to knit or sail.
Too many people still hear similar words…
But Pam’s death haunts me; Kevin’s death haunts me; Laura’s death haunts me; Jane’s death haunts me; the lives of all the people I know who live with what each of them went through drive me away from my birds and bunnies, my flowers, paths and trees—drive me away from my kitchen, away from my novels and poems.
Carving out the future landscape
Periodically, I take some time away from everything. Last week was supposed to be one of those times. It didn’t happen. The everyday problems of life intervened. It’s not clear when I’ll get a few days away, but I have a bit of a busman’s holiday this weekend between the Landers’ Golf Tournament and the PMC. I have no responsibilities beyond showing up to hit a few golf balls, say a few words, and ride a bike for a few hours. I’ll try to get away for a few days after Labor Day and a few more after Columbus Day.
Jane’s death haunts me…
But come mid-December, I’m taking an extended break from day-to-day fundraising and day-to-day NET cancer issues. Part of that time, I’ll spend relaxing and trying not to think about NET cancer. Some of that time, I’ll spend mourning the losses of the last eight years. And some of that time I’ll spend thinking about how to make the next moves in this long war I married into. I can already see the broad outlines forming at the back of my mind. I’ll start working on those in the coming weeks, even as this chapter draws closer to an end.
Whenever the going got tough for her students, Jane challenged them with this quote. Sometimes, I need the same help it gave them.
The Path I walked
We started working on the idea that would become the Walking with Jane seven years ago this month. It was supposed to be nothing more than a Relay for Life team—the kind of thing Jane and I had hoped to do to help others after we retired that June. But Jane was dead—felled two months earlier by a cancer even her doctor had never heard of—and I was barely emerging from the shock of burying the greatest love of my life a month after her 56th birthday.
For seven years I mourned that loss. I can’t explain what happened December 10, 2017. I know I cried a lot. But something was different when I awoke the next day. I still hurt—I expect I always will—but the pain was muted—not as biting, somehow. She does not haunt my every waking moment, my every action, as she had for so long. I felt my brain begin to work again the way it once had.
Help creates knowledge
The time of mourning may have ended, but not the battle against the cancer that destroyed our dreams. That battle continues until it is dead or I can no longer carry on that fight.
And, with your help and support, we have made a difference. The money Walking with Jane has raised has provided the seed money to research NET cancer’s DNA, RNA and the microenvironment that surrounds the tumors. The RNA research may lead to a universal screening test for all cancers—not just NET cancer. We’ve helped create a new NET cancer model that lets scientists understand how the cancer works. And we’ve inspired others to step up in major ways to help fund all those studies and others that may lead to a cure.
Help creates trials
A year ago trials, inspired by some of that research, led to FDA approval of telotristat etiprate. The drug is not a cure, but it does slow the disease down while alleviating symptoms for some patients. Trials for a new therapy, CAR-T, that trains the body’s own immune system to fight NET cancers, will begin later this spring.
But the war against NET cancer is far from over. We’ve gone from diagnosing 10,500 cases a year in the US in 2010 to 22,000 cases a year today. We’ve gone from 105,000 people living with a NET cancer diagnosis in 2010, to over 171,000 today. Last month I read a paper that indicates four percent of all cancers have NET cancer features that complicate curing them.
Help fight any way you can
And the numbers keep growing. NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer. It is not as immediately deadly as colon cancer or pancreatic cancer, but it is a killer, nonetheless—and one without a cure.
This summer, I’ll get on a bike for part of the Pan Mass Challenge. This fall, I’ll take on the Boston Marathon course for the eighth time. With every mile of each, I’ll raise money and awareness for NET cancer research. I know what patients and their families face if we don’t keep moving forward—and I’m determined not to let that happen.
So here I am, hat in hand, asking you for your help. NET cancer killed Jane. Every day, it kills patients I have met on this journey. It won’t let go of me—and I won’t let go of it until one of us is dead.
Please help.
Pax et lux,
Harry
Some other reasons to help
p.s. I lost one of my closest remaining friends to glioblastoma in July of 2017. He was diagnosed in April of 2016. His illness consumed much of the energy I normally devote to this work. In August of last year, I had surgery to remove a basal cell skin cancer from my face. A recovery that was supposed to be measured in days turned into months when the cancer proved much larger than anyone anticipated. I’m fine. They got all of it. But sunscreen is now a daily ritual, even in winter.
p.p.s. Again this year, a generous donor is matching gifts to my Walk, dollar-for-dollar. There’s about $2200 left to claim at this writing for the Marathon Walk and $1280 left for the Pan Mass Challenge. This is an especially good time to help.
If you can’t attend a NET cancer fundraiser, Giving Tuesday is a good time to support NET cancer research. Thoughts and prayers don’t fund a single research project–your donations can.
Shopping thoughts
Black Friday, people shopped. Their thoughts were focussed on the bargains to be had on gifts for loved ones. My thoughts, too, drifted to the bargains. I had tools to replace and some lights I wanted that went on sale.
…each of us can make a difference.
Small Business Saturday found people with a different set of shopping thoughts. I support small businesses near me all year in preference to the Big Box Stores and the online giants. But I went out Saturday to order a print for my living room. Later this week, I’ll make a trip to my local upholsterer to get a chair rebuilt Jane and I bought for our first apartment.
Cyber Monday grows every year–largely without me. But I understand the thoughts that drive the day. And I have a small personal stake in that Amazon sends some money our way every few months through the Amazon Smile program.
Giving thoughts
But today is Giving Tuesday–a day to move our thoughts beyond ourselves to the real needs of others. I’ll write a number of checks today–and not all of them will go to NET cancer groups, though that is a place I focus most of the year. There are homeless to house, hungry to feed, children who don’t have parents, students who need books, and a number of other rare diseases I’ve supported for decades.
…Amazon sends some money our way…
That said, though, NET cancer remains my lodestone. I’ve already written and mailed my checks to support the NET cancer program at Dana-Farber through the Walking with Jane Fund. That fund also supports the 3-in-3 Campaign as it heads into its final year. We are closing in on the $3 million goal we set for it. That money has earned us a new lab and greater support from the leadership at Dana-Farber.
NET giving thoughts
Today, I’ll send substantial checks to the Carcinoid Cancer Foundation and the NET Research Foundation. The first group does more for patient outreach and medical education than anyone–a job it has done for decades. The second focusses on funding research on a global scale. Both are worthy of your support.
…NET cancer remains my lodestone.
Historically, Walking with Jane’s focus has been supporting the NET cancer program at DFCI. We don’t yet take credit cards, so if you want to donate to us, you’ll need to print out a form and send us a check. Anything that comes in between now and January 1 will support my Marathon Walk or my PanMass Challenge ride in 2018. Officially, neither of those launches until January, but whatever I raise now for that will be matched up to a total of $7500.
Scholarship thoughts
Walking with Jane also funds five scholarships to students working to become science teachers or enter the medical professions. Each year, we present a four-year, $1000 a year scholarship to a graduating senior at Westport High School. The student is chosen by the science department there. We also present an annual $1000 scholarship to a student at Bridgewater State University, Jane’s alma mater. They have a committee that chooses the recipient.
Both are worthy of your support.
I’d like to do more than that. A $1000 today is not a huge chunk of money. If enough people made enough donations earmarked for scholarships, I’d increase the size of scholarships we give. My own finances are stretched as far as they can go.
Think–and give–regionally
There are a number of other NET cancer foundations working regionally to support NET cancer programs near them. I’m know every regional NCI cancer program that has a NET cancer program in it could do with your support as well. The truth is every NET cancer research program is hungry for the money to fund their research. Things are better than they were 10 years ago, but that doesn’t mean they are good. We still have too little money to fund the research we have to have if we are going to fund a cure. Another good NET cancer foundation to give to is The Healing NET Foundation. They have a $1000 match going today.
I’d like to do more…
Please, wherever you are, do what you can. It’s Giving Tuesday and each of us can make a difference.
2016 was a busy year, both for Walking with Jane and for me personally. As an organization, we made significant progress on a number of fronts, but lagged behind where I would like us to be in other areas. As an individual, I continued to struggle with my personal demons. Again, there were moments of significant progress—and moments of stagnation and regression. Grief continues to hammer at my heart, but the blows are softer and less frequent.
…a future with less hurt and more hope in it
As many of you know, Dana-Farber asked me to get involved with a fundraising campaign aimed at NET cancer in late August of 2015. We launched that campaign December 9 of last year with a presentation in Boston. I now officially chair that campaign–3-in-3: The Campaign to Cure NET Cancer. Our goal is to raise $3 million over three years for NET cancer research. As this year drew to a close, we were closing in on our first $1 million. That work has taken me to Boston on a regular basis to meet with doctors and researchers and professional fundraisers to help plan and execute that effort. It’s been a positive learning experience.
NETwalkers and #cureNETcancernow
Part of that effort involved, as always, our NETwalkers Alliance Jimmy Fund Walk team. For the first time since I took over as captain, I was not the top fundraiser on the team. That honor falls this year to Jenaleigh Landers, who has been there from the start. Her golf tournament in memory of her father has always put her in the second spot in recent years. The tournament was even more successful this year. Total, our relatively small team raised just over $39,200.
…closing in on our first $1 million.
In addition, we helped launch the first disease-specific Walk group, #cureNETcancernow. The group had four teams and raised just short of $160,000 for NET cancer research. We had nearly 200 NET cancer walkers join in that effort. Only the Dana-Farber employees group had more team members or raised more money—and most of the other groups were run by major companies like State Street Bank.
Ups and downs of a start-up effort
The result of those efforts—and those of a number of people riding for NET cancer research in the Pan-Mass Challenge–is Dana-Farber adding a new gastrointestinal research lab whose primary focus is NET cancer. We were also listed among the funders for a paper on NET cancer co-authored by Dr. Jennifer Chan, who was Jane’s oncologist at Dana-Farber.
…we helped launch the first disease-specific Walk group…
But tasks connected to the 3-in-3 Campaign forced me to cut back on some of the other things Walking with Jane has done over the last five years. Normally, I do two mailings a year for that, neither of which happened. I went three months without posting anything new on our website. Other things slid as well. Start-ups always take more energy than I anticipate, but I hope to get back to a more regular schedule on these other things soon.
Personal successes and losses
Not all of that had to do with the Dana-Farber campaign, though. On the good side, I spent six weeks again this summer teaching journalism fundamentals to high school students in a summer program at BU. The commute is a killer, but working with young people reminds me there is more to life than cancer.
Start-ups always take more energy than I anticipate…
And I needed that reminder especially this year. Two good friends were diagnosed with cancer this spring. Both are in treatment and doing well, by all accounts. But I also lost two NET cancer patients over the summer I had become close to. Their deaths underlined again for me why what I am doing matters—and why I need to keep doing it.
Keeping myself sane
I continued my ongoing landscaping and other house projects. The yard still looks like it’s under construction–because it is–but I finished the patio project, the back half of Jane’s memorial garden and the garden, back, front, and side pathways. I also got a good start on installing a small orchard and another pair of garden beds, while repairing the sinkholes that developed just after Jane died. I’m doing it all by hand, one shovelful at a time, which keeps me in shape and gives me a break from all the mental exercise my other projects force on me.
…why I need to keep doing it.
Indoors, I redid the dining room and bedroom and have a clear vision of what the finished study will look like. I took Jane’s chair in last week to be re-upholstered for that room. Two-thirds of the basement is cleared out and, in the next month or so, I hope to have the electrician in to do some wiring down there.
A year of rediscovery
I’ve also done a ton of reading, some of it related to cancer, but much more of it just for fun. I’ve rediscovered photography, done some writing, done some walking, lost 30 pounds, put 15 back on—bloody post-Marathon issues continue—and tried to build a life that makes sense again. Life feels both more and less empty.
…one shovelful at a time…
The sixth anniversary of Jane’s death was December 10—and it was awful. But I put up the tree for the seventh time without her and I felt good afterward. Somehow something lifted off of me and I felt like a human being again. Maybe Year 7 will finally see me healed enough to think about a future with less hurt and more hope in it.
I hope this finds you and yours in good health and spirits and that the year ahead will prosper you in ways great and small—and in ways you don’t see coming. Go have an adventure. I hope to have several.
Pax et lux,
Harry
Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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…
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.
(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.
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.
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.
