Category Archives: Fundraising

Goals for 2020 for WWJ

awareness, Fundraising, Goals,
The goal of a sea eagle is to raise a chick able to survive on its own. The goal of Walking with Jane is to help form a movement against NET cancer that will survive until we finally have the awareness, the diagnostic tools, and the cure we need to put NET cancer in the grave for good.
The goal of a sea eagle is to raise a chick able to survive on its own. The goal of Walking with Jane is to help form a movement against NET cancer that will survive until we finally have the awareness, the diagnostic tools, and the cure we need to put NET cancer in the grave for good.

Planning for success

I am, by nature and by training, a goal-setter and planner. As one of my early mentors said, “Those who fail to plan, plan to fail.” The result is that I am constantly aware of not only what I want to accomplish, but how I intend to reach those goals. I do this in both my personal and professional lives—though sometimes I have difficulty telling those two things apart.

Together, we will make a difference.

In January of each year, I spend several days reviewing where things stand in my life and sketching out what I want to do in the coming year to move closer to my long-term goals. Those plans rarely survive contact with reality. Life has a way of screwing up even the best conceived notions of what to do and how to get there. Jane’s death pretty much annihilated everything I originally had in mind for the last ten years. 

Setting goals

I rarely share my personal goals outside of a very small circle of friends. Jane was that circle 10 years ago. No one has seen more than the edges of those since she died. That’s unlikely to change very much in the immediate future. I am, where that is concerned, a very private person.

Those who fail to plan, plan to fail.

I have no such reservations, however, about sharing what I want Walking with Jane to do. This is a cooperative enterprise—or at least it is supposed to be. I may bear the bulk of the load, but others play a significant role in shaping where and how things happen here. Sometimes, they do so without knowing they are doing so. Other times, they play a more aware role. All of you need to know what I am thinking and where I’m going and why.

Looking at what is

Last year was emotionally difficult. We lost too many patients whose stories and struggles I knew too well. I have no words that will comfort grieving families or grieving spouses in any real way. The loss of a child, a husband, a wife, a parent at too young an age is an inconsolable thing. It underlines how badly we need better awareness among medical professionals and among the general public. It underlines how badly we need better diagnostics, better treatments—and how badly we need to find a cure.

This is a cooperative enterprise…

When we started Walking with Jane, there were too few support groups, too few reliable sources of information for patients written for patients. Today, those things are far easier to find. We had nothing to do with any of that—other people figured out what to do to make those things happen and work. I could see the need, but I couldn’t figure out how to get there. Today, I honestly don’t worry about those things beyond helping people find them.

Goals for raising awareness

But awareness outside of patient groups remains a substantial problem. Despite a myriad of efforts by a wide variety of groups, few primary care doctors or nurse practitioners have any knowledge of NET cancer. If we are to begin catching this disease early enough to make a real difference in the lives of patients, we need to change that. Today, we still only catch the disease in its early stages by accident.

Last year was emotionally difficult.

Nor, despite the fact NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer in the number of patients currently diagnosed with the disease—does the general public have any awareness of NET cancer.  If we are to raise the money to do the basic research that will lead to a cure for this disease, we need to change that.

Legislative goals

To those two ends, Walking with Jane will focus on developing three initiatives in the coming year. Greta Stifel, a NET cancer patient in CT, spent two years successfully crafting and lobbying for a law in her home state that now requires all primary care physicians and nurse practitioners do course work in rare diseases as part of their recertification process. I have promised her we will work with legislators in the rest of New England to pass Greta’s Law throughout the region. We will encourage those in other regions to do likewise, intending to push for federal legislation within the next five years. My thought is we need to learn how the legislative process works at the state level before we take on the federal government.

Today, we still only catch the disease in its early stages by accident.

I know of few patients who have exhibited more devotion to the cause of NET cancer than Greta. She deserves the honor of legislation named on her behalf. Let’s all work to make this happen.

Expanding on past goals

This action will, we hope, be one step in raising awareness among medical professionals. But we need to do more than that. In November, as part of NET Cancer Awareness Month, Walking with Jane launched the #30NETfactsin30days campaign. We reached out to over 500 medical and news organizations with a single fact each day about NET cancer.

Let’s all work to make this happen.

Some student nursing groups picked up the campaign, as did a small group of medical schools. We will attempt to build on that campaign in the coming months with similar campaigns focused on pancreatic NET, lung NET, pheochromocytoma and paraganglioma, intestinal NET, and High Grade neuroendocrine carcinoma. 

More awareness

These two efforts may help to raise awareness among people in the medical community, but we need to find other means of doing so, as well. We remain open to anyone who has materials they would like to share with all levels of medical practitioners. I can think of at least two recently constructed books I’d love to get directly into physician and NP hands.

Walking with Jane launched the #30NETfactsin30days campaign.

The third initiative is aimed at raising awareness among the general public. I’ve honestly no idea how to accomplish this. But I will spend considerable time talking to friends in marketing about how we create our own “ice-bucket-challenge” moment—and how we build on that moment.

Money goals

Money matters. It’s how we pay for the research we need that will lead to better diagnostic techniques and a cure in the long-term—and to a better quality of life for patients in the short-term. Walking with Jane will continue to work on a range of local fundraisers, including craft fair appearances, dinners, miniature and real golf tournaments, sponsorships, and letter-writing campaigns.

… we need to find other means of doing so…

We will continue to have and support teams for events like the Boston Marathon Jimmy Fund Walk and the Pan Mass Challenge. We will continue to advise any team for those or similar events elsewhere.

Expanding funding base

But we will also begin to publish here and elsewhere a series of articles on how to raise money through specific techniques. We already have in hand a piece on how to run a golf tournament, written by someone who has run one of the most successful charity tournaments for the Marathon Walk.

Money matters.

Other articles will include how to draft a fundraising letter, generate a mailing list, run a craft fair, put on a dinner, and put on a miniature golf tournament. Each will be written by someone who has successfully run that kind of event.

Shifting focus

These first five goals evidence a clear shift in Walking with Jane’s focus away from providing medical information and other patient support to raising awareness in the medical community and the general public while continuing grassroots support for helping to raise money for medical research. That shift will also be reflected in the thorough redesign of this website.

…articles on how to raise money through specific techniques.

We will continue to provide links to the best available information and support for patients and their families. However, we will rely on other sites run by other entities to carry the bulk of that load. We will provide links to those sites rather than trying to duplicate their efforts.

Building networks

Once upon a time it seemed there was a need for us to be all things to all people. If that time was something other than a figment of my imagination—and it likely was—that time has now most certainly passed. Increasingly, I see Walking with Jane as part of a network of organizations working on particular parts of the NET cancer problem.

…a clear shift in Walking with Jane’s focus…

One of my goals for this year—and into the future—is to help that network develop in every way that I can so that no one ever confronts the situation Jane and I did in the summer of 2010. 

Finishing goals

With one exception, our other goals for 2020 are pretty simple. First, as many of you know, I spent a part of last year building an office for Walking with Jane in the basement of my house. The organization had largely taken over my study—where it started—my guest room, my dining room, and my living room—and had begun to creep into my bedroom. While the construction is finally completed, I’m still unpacking the preceding seven years of paperwork.

…to help that network develop in every way…

Finishing that and getting the various pieces of paperwork done for the state and federal governments are my next priorities.

Looking beyond

Which brings me, at last, to my final goal for 2020: In 2021, for reasons I’ve detailed elsewhere, I’m taking a year off from most of what I do with Walking with Jane. To do that, I need to recruit some people to take on some of the work I do here. If you’d like to do some of that, I’m willing to train you. Just drop me a line at hp@walkingwithjane.org.

I’m still unpacking the preceding seven years of paperwork.

As always, we face lots of challenges in the year ahead. Together, we will make a difference. We will make life better for every NET cancer patient and their families and loved ones. We will keep working to find better diagnostics, better treatments and—ultimately—a cure. Together, we can do this.          

Giving Tuesday and NET cancer

awareness, Fundraising, NET Cancer Awareness Day/Month
It's snowing on Giving Tuesday in New England. Warm some hearts by making some meaningful donations to organizations that need your help. I hope at least one of them will deal with NET cancer.
It’s snowing on Giving Tuesday in New England. Warm some hearts by making some meaningful donations to organizations that need your help. I hope at least one of them will deal with NET cancer.

Things to think about on Giving Tuesday

I’ve spent a lot of time thinking about what to do with Giving Tuesday. Part of me just wanted to suggest people give to the big NET cancer foundations like NET Research Foundation and Carcinoid Cancer Foundation. I’m sending checks to both of them today.

…do what you can where you can.

But I made a promise to a patient before she died that I would find a way to raise awareness and educate primary care doctors and nurse practitioners about NET cancer, while also trying to raise awareness among the general public. It’s taken me some time to work out how to do that. The #30NETfactsin30days campaign was the first salvo in that effort. It–and the next step–are relatively inexpensive to do, but not likely to have a huge impact.

Raising PCP and NP awareness


Things that could have a bigger impact are expensive. We need a Continuing Medical Education video/course that will teach doctors the basics of NET cancer–and we need to market that program in the places medical folks will see it. We need PSAs for television and radio for the general public. Just the production costs for any of those projects are expensive, never mind what it costs to actually get something on the air.

I made a promise…

I’d really like folks to make donations today to the NET cancer cause. Make a decision to do what you can where you can. No matter what you do, I’ll be grateful. If you want to donate to Walking with Jane’s Laura Hoke Fund for Physician Education and Awareness you can find a link on our Facebook page. All donations made there go to that fund. Or, if you want to donate by check, you can send checks to Walking with Jane, P. O. Box 9721, Fall River, MA 02720. Put Hoke Fund in the memo line.

Thank you.

Neuroendocrine cancers: problems and dilemmas

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NET Cancer Awareness Day/Month
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.

Neuroendocrine cells

All neuroendocrine cancers come from neuroendocrine cells. Neuroendocrine cells are the way the nervous system and the endocrine system communicate and create the hormones and peptides our bodies need to do everything from build muscle to digest food to run away or stand and fight. They are involved in everything our bodies do to survive and thrive.

Lives depend on that attention and awareness.

Neuroendocrine cells are found just about everywhere in the body. As a result, neuroendocrine cancers can appear almost everywhere in the body. On the surface, at least, that makes them different from the ways we think about most cancers. When a cancer occurs in the lungs, we call it lung cancer. When a cancer happens in the pancreas, we call it pancreatic cancer. When we get cancer in the liver, we call it liver cancer.

Matters of body geography

But a neuroendocrine cancer in the lung, pancreas, liver–or anywhere else–is often a very different disease from the “normal” cancers that occur in those organs. They may have very different symptoms. They can’t be discovered using the same tests and scans. They frequently don’t respond to the same chemo and radiation treatments.

…neuroendocrine cancers can appear almost everywhere…

And some, but not all, produce hormones in significant enough quantities to have an impact on body chemistry. Those changes can speed up digestion, slow respiration, speed up heart rate, raise or lower blood pressure, change moods–essentially affect anything a hormone or peptide can affect.

Testing for neuroendocrine

Tests for hormone levels can be difficult to administer, as well as expensive. Until recently, for example, testing for serotonin, a hormone commonly produced by neuroendocrine tumors, involved a patient collecting all of their urine for 24 hours. That urine would then be sent to a lab to be individually analyzed for chemicals related to the breakdown of serotonin. Based on those levels, the lab would then extrapolate how much serotonin was being produced and whether or not that fell into normal ranges.

…an impact on body chemistry.

And no doctor is likely to order tests without better cause than a fishing expedition based on a group of vague symptoms that may or may not be explained better by something else.

More complications

Another complication in diagnosing and treating a neuroendocrine cancer is the very number of possible hormones involved and their impact on an individual patient’s symptoms. High serotonin levels produce very different symptoms from high adrenaline levels. And each may require a different treatment regimen.

Tests…can be difficult to administer…

As if that were not bad enough, neuroendocrine cancers come in at least two very different structural types. NET cancers are low grade, well-differentiated tumors that often grow slowly. That slow growth may be part of the reason traditional radiation and chemo therapies don’t work well on them.

The carcinoma difference

Neuroendocrine carcinomas, on the other hand, can be very aggressive. They are high grade, poorly differentiated structures. Their aggressive nature may make them more open to more traditional-looking therapies. But the success rate is not particularly high.

As if that were not bad enough…

In truth, for both types of neuroendocrine cancer, the only curative therapy we have is surgery. And that only works when the cancers are discovered quite early. Otherwise, our treatments can ease symptoms and/or slow the advance of the disease.

Researching neuroendocrine

Neither neuroendocrine cancer form is well understood. And we simply lack the funds to do enough fundamental research into their biology to create the knowledge that could lead to either early detection or a cure.

…the only curative therapy…

A large chunk of that kind of research funding is created by the NET Research Foundation (NETRF), though many NET cancer centers do raise and spend significant amounts to do that work–amounts that may, together, equal what NETRF supplies. The Neuroendocrine and Carcinoid Tumors Program at the Dana-Farber Cancer Institute, for example, raises over $1 million each year to fund research.

Barriers to diagnosis

Two significant barriers exist in the fight against neuroendocrine cancer. The first is awareness among primary care physicians and nurse practitioners about the disease. The Carcinoid Cancer Foundation uses the phrase, “If you don’t suspect it, you can’t detect it” to underline why physician knowledge and awareness matter. I would go one step further and suggest that doctors can’t suspect what they’ve never heard of. In too many cases, too many doctors and nurse practitioners have never heard of the disease.

…much research funding is created by NETRF

The second barrier is public awareness. Neuroendocrine cancer is the second most prevalent GI cancer in the United States. Only colon cancer has more diagnosed patients. Yet few people outside the neuroendocrine cancer community and their immediate families have ever heard of it.

Raising Awareness

I talk with doctors and nurses in a variety of settings. Even many oncologists have never heard of neuroendocrine cancer. I speak in public settings with some frequency. I am too often greeted by incredulity that such a cancer can have flown so long under the radar.

Two significant barriers exist…

Neuroendocrine cancers need a greater level of awareness and attention from both doctors and the general public. Lives depend on that attention and awareness. The #30NETfactsin30days Campaign is an effort to create that greater awareness.

I lost Jane eight years ago. I'm still fighting her cancer.

Help us #cureNETcancernow

Boston Marathon Jimmy Fund Walk, Fundraising, NETwalkers Alliance, Pan Mass Challenge
I lost Jane eight years ago. I'm still fighting her cancer. You can help.
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 Pan Mass Challenge. Help me reach my $10,000 goal.
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

The 30th annual Boston Marathon® Jimmy Fund Walk on Sunday September 23rd, 2018. Along the Course, Beacon Street, Brookline. I captain the NETwalkers Alliance. Help us reach our $100,000 goal.
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.


Goals for 2019 for Walking with Jane

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance, Pan Mass Challenge, Relay for Life

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.
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

  1. Raise $900,000 in small donations for the Program in NET Cancer at DFCI
    1. Retain and Expand the #curenetcancernow Boston Marathon Jimmy Fund Walk group
      1. Set a group goal of $200,000 and 300 walkers
      2. Set a NETwalkers Alliance team goal of $75,000 and 30 walkers
      3. Set a personal Walk goal of $18,000
    2. Expand the number of riders for NET Cancer of the Pan Mass Challenge
      1. Set a total Ride goal of $700,000
      2. Help the Heidi’s Heroes team reach $250,000
      3. Set a personal ride goal of $12,000
    3. Help NET Walk and PMC teams develop effective fundraising activities
  2. Support efforts by the development office at DFCI to attract and retain large donors
  3. Raise an additional $20,000 to support the Primary Care Physicians NET Cancer Awareness Initiative (Laura Maguire Hoke Fund for NET Cancer Awareness)
  4. Raise $4000 for the Jane Dybowski Scholarship Fund
  5. Help other NET cancer centers develop effective small fundraising events for Walks, Rides, etc.
  6. Write and recruit fundraising articles for the fundraising section of the website and for the Walking with Jane Fundraising group

Awareness Goals

  1. Redesign website in support of the new vision and purposes
  2. Create both and materials for primary care physician conferences
  3. Book and attend primary care physician conferences
  4. Create press releases and pamphlets as needed
  5. Create PSAs as needed
  6. Do 2018 form 990 and post—with past years—to new website
  7.  Create a team for Relay for Life

Infrastructure Goals

  1. Complete Walking with Jane office
  2. Update computer system and printer as needed
  3. Design banners for craft fairs and PCP conference booth
  4. Redesign and rewrite website
  5. Maintain and expand social media connections
    1. SnapChat
    2. Others
  6. Create detailed monthly plans for all of the above
  7. Implement plans on a daily basis

The changing NET cancer landscape

Fundraising, Goals, NETwalkers Alliance, Pan Mass Challenge

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.
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.

I’ve tried to lay some groundwork…

Personally, I’m in the last four months of chairing Dana-Farber’s 3-in-3: The Campaign to Cure NET Cancer. The goal of that campaign—$3 million in three years—is within sight–despite what the giving page says. We’ve had big donations and small donations and everything in between. We have multiple Boston Marathon Jimmy Fund Walk teams, a substantial Pan Mass Challenge team and a number of independent riders whose efforts support that cause, and a number of different named funds, all of which support a substantial research program at the Dana-Farber Cancer Institute.

Credit where credit is due

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.
—Harry Proudfoot
Chairman, Walking with Jane

Help support NET research on foot or bike

Boston Marathon Jimmy Fund Walk, Fundraising, NETwalkers Alliance, Pan Mass Challenge, Relay for Life

Whenever the going got tough for her students, Jane challenged them with this quote. Sometimes, I need the same help it gave them.
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.
Join or donate to our Marathon Walk 
Join or donate to our Pan Mass Challenge Effort  

 

 

 

 

 

Relay Fall River turning 20 in June

Fundraising, Relay for Life

Tents begin to sprout for Relay in late June each year in Fall River. People walk the track throughout the night to raise money for cancer research and patient support services.
Tents begin to sprout for Relay in late June each year in Fall River. People walk the track throughout the night to raise money for cancer research and patient support services.

Twenty years of Relay

Relay for Life of Greater Fall River observes its 20th anniversary this year. In honor of that event, the local committee is designing a commemorative t-shirt. At last night’s captains’ meeting they asked us to say why we Relay for part of the design.

Walk to remember…

I couldn’t come up with anything clean enough to go on a G-rated t-shirt. My hatred of cancer is well-documented and solidly rooted in experiences that long predate what I went through with my wife Jane. One of my best friends lost her father to cancer when we were in the eighth grade. I lost my favorite uncle to spinal cancer a couple of years later. In college, I watched another friend wrestle with her father’s eventually fatal colon cancer.

Twenty-six cancers in five minutes

As a young man, I watched two of my neighbors—people I spent lots of time with—succumb to cancer from a much closer vantage point. They lived downstairs from me. He had lung cancer. More than once his wife pounded on the pipes to bring me downstairs to help him get up from where he had fallen. Not long after his death, they found she had colon cancer. She died soon thereafter.

…committee is designing a commemorative t-shirt.

Last night, I made a list of all the cancers people I knew—or know—have dealt with. In five minutes, I had a list of 26 different cancers. For all but three, I knew someone who had died from them. And even for those three, the cancer deeply changed the people who had them—and the people around them.

Relay retirement

For Jane and me, teaching was a consuming passion that left little time for much else. We wanted to do things like Relay and the Marathon Walk—and planned to do them after we retired. We both had more than enough reason to. Instead, while we worked, we sent money to the Jimmy Fund and the American Cancer Society and a handful of other cancer research funds. We envied the people who had the time and energy to do more.

…I had a list of 26 different cancers.

And then, Jane died. She died of a cancer no one had ever heard of—and that almost no one seemed to care about. I now know more people who have that cancer—or have died from that cancer—than I know people who have had or died from every other cancer I have experienced in the lives of others combined. And the number of people I’ve lost to those other cancers is not a small number, either.

Why I Relay

I should be numb by now. I’m not. None of those deaths has had an impact on me that rivals Jane’s, but every one of them hurts—and every one of them reminds me how much more remains to be done. I may hate NET cancer more than the other cancers—but I truly hate them all.

We both had more than enough reason to.

I hate them because of what they do to the people who have them. I hate them because of what they do to the families—to the spouses and the children and the mothers and the fathers and the brothers and the sisters and the aunts and the uncles and the grandparents. I hate them because of what they do to the friends.

And then, Jane died.

So I keep walking. I keep talking. I keep writing and reading and looking for new ways to help raise the money and awareness that will finally drive cancer into the grave rather than the people who have it.

Find a Relay near you

If you’ve never experienced Relay for Life, you should. It’s one of the most amazing things I’ve encountered since Jane died. It’s a community of people who have fought cancer—as patients, as families, as caregivers. They celebrate the victories and mourn the losses and work to find the answers to every type of cancer there is. They work to support patients and caregivers in a dozen different and meaningful ways beyond research—from supplying rides and cosmetics to providing a place for a family to stay so they can be close to the person getting treatment.

I truly hate them all.

And if you are in the Greater Fall River area, you should join us June 22-23 at Bishop Connolly. Walk to remember Jane. Walk to remember John. Walk to remember the people in your life who have fought cancer to their dying breath—or to honor those who are still fighting, and hoping for a cure.

Walk–and Ride–season approaches–join us

Boston Marathon Jimmy Fund Walk, Fundraising, PanMass Challenge, Relay for Life

I did my first Marathon Walk to support NET cancer research in 2011--and captained my first Marathon Walk team in 2012. You can make a difference.
I did my first Marathon Walk to support NET cancer research in 2011–and captained my first Marathon Walk team in 2012. You can make a difference.

Walk–or ride–you can help

Research carries a hefty price tag. Part of the work Walking with Jane does is raise money for that research. You can help, either by participating in a fundraising event–or by donating to one. Starting this week, we will publish a weekly update on our major efforts–and the fundraisers we do to support those efforts.

Here’s this week’s update on my cancer fundraising.

Boston Marathon Jimmy Fund Walk

September 23—various start times and locations. Team Name: NETwalkers Alliance

The bulk of last week’s efforts went to setting up my personal and team pages for this event. Including the check I mailed out this morning, we’ve raised $6835 for NET cancer research through this event for 2018. That’s the fastest start I’ve ever had straight out of the gate—and leaves me $665 short of Four Star Pacesetter status. It was early September last year before I reached that level. I’m hoping to reach that this week.

The Jimmy Fund Walk Brunch was this weekend. Officially, the Landers Charity Golf Tournament run by team member Jenaleigh Landers and her family, was the second largest individual fundraising event for the Walk, raising $17,689.  The #cureNETcancernow group, of which the NETwalkers is a part, finished third among groups, less than $1500 behind the second place group made up of State Street Bank employees.

The Landers Tournament will take place August 4 at the Bradford Country Club in Haverhill, MA, if you want to pencil that in on your calendar. Details should follow shortly.

As of today, I remain the only person signed up for our team for the Walk. I hope to put out a recruiting letter this week, as well as a fundraising letter. But you don’t need to wait for either one. Just click to sign up or donate.

PanMass Challenge

August 4-5—various start times and locations. Team Name: Heidi’s Heroes.

I’ll take on the 50 mile Wellesley-Patriot Place-Wellesley round-trip on Sunday. I’ll be at the Landers Tournament on Saturday, so much as I’d like to do more…

I’ll reach $3290 raised for this once the PMC gets a check for $670 I have to send them. The team is at $23,245 this morning, but held a fundraiser yesterday in Dover, MA that has not reported in yet. That conflicted with the Brunch for the Walk yesterday, so I wasn’t there.

The team has another fundraiser at Orange Theory Fitness at the studio 610 Providence Highway, Dedham. This is an upbeat one-hour workout experience. If you have not tried it, you must come see what it is all about. You set your own fitness goals and work out in the company of peers and under the direction of a coach. Registration donation is $35. To sign up, go to PMC.org, donate to Team Heidi’s Heroes, in memo put “Orange Theory Fitness.” Then email Heidi (fischerheidi@msn.com) so she can add you to the class list. Need to sign up by Friday March 23.

Relay for Life of Greater Fall River

June 22, 3 p.m. to June 23, 10 a.m.—Bishop Connolly High School, Fall River MA. Team Name: Walking with Jane & John.

If you’ve never been to a Relay for Life, it is a one-of-a-kind experience in Fall River. As an event chair several years ago, I toured many different Relays. Fall River’s event is the most intense I’ve seen. We don’t do as much here as we once did—the work on NET cancer was always my lodestone, and the more responsibilities I took on for that, the less energy I had for Relay beyond the day of the event itself. But we have had a presence at every Fall River Relay since Jane’s death. We’ve become famous for our chowder in the food tent. This year, we’ll have chowder again, but replace Gail’s famous clam cakes with stuffed quahogs instead. Come help us feed the masses—and take a few laps around the track in memory and support.

The Relay Craft Fair is at White’s of Westport on May 5. I’ll be there to raise money for the Jimmy Fund Walk and the PMC.

So far, we have raised $560 and have two team members signed up. Please take a few minutes to sign in if you are going to help us serve that night.

This year, we’ve changed the team name to honor our dear friend John—Jane’s best friend in the science department at WHS—whom we lost to glioblastoma last July 1. John was a fixture at Walking with Jane events—and we all miss him very deeply.

Redesign time: What are your thoughts?

awareness, Fundraising, Goals

The initial era of Walking with Jane is drawing to a close. As we head into the next era, we need to rethink what we are doing--and redesign the website in accord with the new role and the new goals of the organization.
The initial era of Walking with Jane is drawing to a close. As we head into the next era, we need to rethink what we are doing–and redesign the website in accord with the new role and the new goals of the organization.

Redesign long overdue

Just about 6.5 years ago we started the design of walkingwithjane.org. At the time, it was a state-of-the-art design. We tinkered with it over the first year or so, but content reigned over all else in terms of effort. We had a particular set of goals in mind, and designed accordingly. We haven’t done a redesign since.

…I’d like your input…

Last year I was on the periphery of the design of the 3-in-3 campaign website. The rough draft blew my mind. It drew on everything that has evolved over the last several years. It was the website I hope we would have designed today if we started from scratch.

Redesign needs to reflect changes

Except, it’s not. There are features in it I like, but it was designed for a very different purpose than this one was. Nor is this website designed for the new focus I have in mind for the next three years of Walking with Jane. Times have changed. Our goals have changed. This website must change to reflect those changes.

The rough draft blew my mind.

In 2011, I felt we needed to be all things to all people. It proved too great an undertaking for one person to maintain. Others have come on the scene who do what I wanted to do, only better. The Carcinoid Cancer Foundation provides better resources for patients and caregivers than anything I can provide. We now have dozens of support groups. We have other sites and individuals gifted at translating doc-speak into human terms.

Redesign for general audience

But we are still weak in two areas: fundraising and general awareness. NET cancer research funding has shown steady improvement since 2010, but still lags far behind diseases with fewer patients at risk. NET cancer has become the second most prevalent form of gastrointestinal cancer, trailing only colon cancer. Within three years, we can expect it to reach levels that will end its legal status as a rare disease.

Our goals have changed.

Walk down the street and ask 10 people what cystic fibrosis, pancreatic cancer, or MS are and people will know them. Ask those same 10 about NET cancer–more prevalent than any of them–and you will meet blank stares. If doctors can’t detect what they don’t suspect, can’t suspect what they’ve never heard of, we cannot expect people to donate to research a disease they don’t even know the name of. Nor can they suggest to their doctors that their symptoms may add up to something more deadly than a little intestinal discomfort.

Redesign for medical folk, patients

We need to continue to educate primary care doctors, physician assistants, nurses and specialists likely to encounter NET cancer, as well. I talk with every doctor and nurse I encounter. Rarely have any of them even heard of NET cancer even under the term carcinoid. Those who do, rarely know anything beyond what they learned years before in a passing mention in school.

…more deadly than a little intestinal discomfort. 

And we need to continue to help patients understand the various treatment options they do have through the personal stories of patients who have experienced things like PRRT, telotristat, and liver embolization, to name just three. As the number of treatments grows, patient awareness of those treatments needs to grow as well.

Redesign input requested

I have some ideas about what a redesigned walkingwithjane.org looks like. I’m talking with some web designers over the next few days. But I’d like your input as well, both in terms of what the site looks like and what the content needs to include. What can’t you find that you need to find?

…we need to continue to help patients…

And I’d also like you to think about sites we need to link to that are doing good work. I don’t see a point to duplicating what others are doing well or have the resources to do better than I ever will. For example, if you want to find a doctor, you can’t do better than the Carcinoid Cancer Foundation’s listings.

You can post your thoughts in the comments section below or contact us at walkingwithjane@gmail.com.