Category Archives: Marketing NETs

One trial could be NET cancer key

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

The polio vaccine trial

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

…our most important resource…

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

One man’s trial

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

They took that risk.

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

A personal trial

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

He wasn’t a scientist…

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

The first time my universe changed

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

I didn’t know what polio was…

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

Jane’s personal trial

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

That trial meant I would never get polio…

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

Our most valuable resources

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

She wanted to beat NET cancer…

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

The power of one trial

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

…we need more than scientists and donors.

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

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

First NET Cancer Walk Team Summit

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

The NET Cancer Team Summit–An overview

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

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

What I sent this morning

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

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

Some final notes

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

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

Reporting what I found

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

Five years: The big picture–Part 7

awareness, Fundraising, Goals, Marketing NETs

Every picture tells a story

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

Lives are at stake…

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

Parts of the picture are blurry

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

We have glimmerings of a better understanding…

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

Picture the future

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

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

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

Leading by example

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

Every cancer has weaknesses.

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

Patients paint their own picture

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

…I let my ego get in the way…

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

Regional picture

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

…patients seem to agree…

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

Local picture

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

We didn’t plan it that way.

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

Imperfect picture

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

 We created a zebra herd…

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

Personal Picture

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

I’ve told Jane’s story…

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

Another view

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

I made a vow…

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

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

 

Five years: Building resources–Part 6

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

Hammering the awareness nail

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

This cannot be about redividing the pie…

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

Awareness limits and builds resources

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

…ignorance remains a big piece of the problem.

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

Limited resources, limited ability

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

…part of me would rather not have known…

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

What we do without

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

…a cure remains elusive.

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

The price of limited resources

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

Looking at those cells had to wait.

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

Every dollar counts

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

…that is the reality.

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

Eventually, you’re talking real money

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

…every dollar counts.

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

Offering knowledge

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

Our local fundraisers are tiny.

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

Helping NET cancer centers grow

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

…we continue to grow the pool of money available…

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

Growing the resources pie

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

If we can inspire even five similar efforts…

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

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

 

NET cancer research needs you

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

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

NET cancer team letter

Dear friends,

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

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

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

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

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

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

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

…take concrete steps to change the reality…

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

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

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

Pax et lux,
Harry

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

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

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

Five years: WWJ awareness goals and plans

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

Planning matters

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

…raising awareness will be the most difficult part…

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

Planning in the blood

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

Cancer, in general, is an overwhelming force…

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

Plans start with goals

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

Having a plan does not always mean you win…

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

Lack of awareness

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

Our goal is simple… 

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

Impact of awareness

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

…sometimes surgery is useless.

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

Website awareness

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

NET cancer still pales next to breast cancer…

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

Social media awareness

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

…I need to recruit some help…

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

Other avenues

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

We need to continue to develop social media.

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

Getting the word out

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

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

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

Awareness is key

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

We need to do more with visual media.

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

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

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

Five years: reflections on NET cancer–Part 1

Fundraising, Goals, Marketing NETs, Uncategorized

Five years of unreached goals

I flew back from Seattle five years ago this weekend. On those flights, I set down on paper my plan for the first five years of my personal war on NET cancer. I’ve spent some time this week thinking about that plan and why it has failed in so many ways since.

…I was egotistical enough to think I could do better.

Part of it was my own innocence. I didn’t realize how steep the learning curve would be–nor how many things I would have to master to even begin to accomplish those goals. And I underestimated the depth and power of my own grief and how much it would cripple me. Things I thought would be easy have been anything but. And the things I knew would be hard have proven even more difficult.

Five years of raising awareness

The most basic goal was to work on awareness of the disease. I know how to get the word out about issues. I can write articles, make videos, imagine and create pamphlets. I’ve taught advertising and public relations. I know how all those things are supposed to work.

Part of it was my own innocence.

But just because you understand the theory of how that business works does not mean you understand how it works in practice. There are thousands of issues out there clamoring for attention. And getting people to pay attention to any one of those issues for even a fraction of a second has proven very difficult.

Five years of reaching out

I expected to educate three million people about NETs in the last five years. We haven’t come close. I’ve pieced together scripts for several public service announcements of varying lengths and have produced four of them. They exist on Walking with Jane’s YouTube channel and I’ve used them on our Facebook page. Fewer than 1000 people have seen them.

The most basic goal was to work on awareness…

I produced a pamphlet on NET cancer and Irritable Bowel Syndrome with the idea of getting copies into doctors’ offices across the country. Two local offices actually took them, but what they did with them I have no idea. I’ve used them any time Walking with Jane has done a yard sale or craft sale or other public event. And I’ve sent them to people who donated money to the cause. In five years, the total number of those pamphlets distributed is less than 500.

Five years of figuring things out

The Internet and Social Media seemed like another good avenue to educate people about the disease. Of all the things I have tried to do to raise awareness, my efforts there have been the most successful. In the just over four years since the launch of walkingwithjane.org, we’ve had about 20,000 people visit the website. Each person, on average, has read three or four items. That’s about 61,000 hits since the launch.

Fewer than 1000 people have seen them.

But the vast majority of the people who read walkingwithjane.org are people who already have been diagnosed with the disease or are caregivers for those people. The general public remains largely ignorant of NET, of carcinoid, of anything to do with the disease about 120,000 Americans deal with every day. I still have not figured out a way to break out into the larger population.

Five years of uncertainty

Unfortunately, no one else really has accomplished that either. Certainly, other blogs and websites have a bigger audience than walkingwithjane.org and our Facebook page have. But they, too, fail to reach a more general audience. None of us has figured out a way to make the jump from NET cancer patients and their caregivers to the general public.

The general public remains largely ignorant…

And we need to make that jump. We don’t really know how many people out there have this disease and don’t know it, how many cases of IBS are actually NET cancer, how many cases of right-side heart failure are caused by NET cancer, how many people die from NET cancer and are told something else killed them. When doctors don’t know to look for it–let alone suspect it–and patients don’t know even that it exists, we have a public health problem of unknown size and scope.

Five years of building research

The second problem I thought about on that plane trip home was the number of people working on NET cancer. The number at the time was tiny. I think it is better than it was, but I doubt there are 500 people in the world really working on this form of cancer even today.

…we need to make that jump.

Part of that has to do with the awareness problem: you can’t research something you’ve never heard of. But part of it has to do with a lack of resources. The year Jane died, we spent less than $2 million on NET research in the US. You can’t hire very many researchers for the kind of money. Things are better than they were five years ago, but I’m pretty sure I had very little to do with that.

Five years of building support

And money was the third piece of the problem. Somehow, we needed to raise an awful lot more money if we were going to come up with the people and the lab space necessary to get enough knowledge to begin looking for ways to cure NET cancer.

…I had very little to do with that.

My vision for what eventually became Walking with Jane was an organization that would address all three of these issues in ways they had not, to that point, been done as far as I could tell. I envisioned an organization with a broad national reach that would double what was raised for NET cancer every year for five to ten years until we had enough coming through multiple doors to make a substantial difference.

Five years of external obstacles

Yes, there were two organizations aimed at research and awareness, but they didn’t seem to be having much impact. And I was egotistical enough to think I could do better.

…money was the third piece of the problem.

I was wrong. Given the obstacles in their path, they were doing the best they could–the best anyone could. We weren’t talking about a cancer that regularly killed children; we weren’t talking about a cancer that killed quickly; we weren’t talking about a cancer that affected millions–at least not as near as we could tell. There is nothing sexy or exciting about NET cancer that will get a rise out of the general public.

At least not yet.

In order to raise awareness about NET cancer over the last five years, Walking with Jane has employed a number of different strategies. At last year's Relay for Life of Greater Fall River we set out 1500 NET cancer themed luminaria bags in several large herds around the track. Those herds were backed with informational signs about NET cancer.
In order to raise awareness about NET cancer over the last five years, Walking with Jane has employed a number of different strategies. At last year’s Relay for Life of Greater Fall River we set out 1500 NET cancer themed luminaria bags in several large herds around the track. Those herds were backed with informational signs about NET cancer.

Editor’s note: This is the first in a series of articles looking back on Walking with Jane’s goals over the last five years and setting goals and planning for the next five. 

Campaign to Cure NET Cancer Press Release

Fundraising, Goals, Marketing NETs, Uncategorized

For Immediate Release

Dana-Farber announces campaign for little-known cancer

Every 35 minutes someone is diagnosed with a potentially deadly cancer most people have never heard of.
Every 43 minutes, someone dies of that same cancer.
The Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors announced a new fundraising initiative December 9 to take on that little-known form of cancer that affects about 120,000 people living in the US.
3-in-3: The Campaign to Cure NET Cancer aims to raise $3 million over the next three years for research aimed at finding a cure for the disease. Currently, unless the cancer is discovered early—before it even becomes symptomatic–there is no cure for the disease.
And while it is slow-growing and many people live for many years with it, in some cases it can cause debilitating symptoms. Patients can suffer as many 20 diarrhea episodes a day, frequent insomnia, and blood pressure and heart issues.
The Program in Neuroendocrine and Carcinoid Tumors at DFCI is at the forefront of international efforts to understand and cure the disease. It developed new drug therapies for pancreatic NETs—the cancer that killed Steve Jobs—that the FDA approved in 2011.
Program researchers also helped develop and test telostristat etiprate, a new drug that was recently tested in a successful Phase 3 trial reported this fall that many anticipate will lead to speedy FDA approval.
Program Director Matt Kulke, MD, told those at the launch event at DFCI that, following the recent development of new neuroendocrine models that will enable the rapid identification of new targets and testing of new drugs, the program is now poised to make an even bigger impact.
“We are in a truly unique position at Dana-Farber,” Kulke said. “Not only are we a leading neuroendocrine tumor center, but here at Dana-Farber we also have the opportunity to apply the latest technology and work with the top cancer researchers in the world to go after this disease.”
NET cancer research has never been well-funded compared with other cancers. Funding for basic research and initial drug development in the US was likely less than $2 million in 2010.
 
While funding has improved since then, at under $10 million it still does not amount to a rounding error on what is spent on research into more well-known cancers in the US.
 
Walking with Jane founder Harry Proudfoot, who gave the welcoming speech at the December 9 event, said the campaign is part of an effort to change that. Proudfoot lost his wife to the disease in December, 2010 and has been active in NET cancer circles since then.
 
“People say you can live a long time with this disease,” he said. “That may be true. But what matters is both length of life and the quality of that life. If you are spending your days on the toilet and your nights staring at the ceiling waiting for sleep that never comes, that’s not much of a life.”
Donations can be made at the Campaign website at http://www.myjimmyfundpage.org/give/33nets
For further information, contact Harry Proudfoot at walkingjane@gmail.com or 508-674-0279.

The text of Proudfoot’s remarks at the kick-off are available here.

Photographs with captions:

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

 

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

Killing NET, one step at a time

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

A word about this post

One of the things I said I would do last winter when I was writing about goals and planning was I would share the letters I write for fundraising with the NET cancer community in the hope those letters would help other groups besides Walking with Jane raise money to help their regional NET cancer programs.

What follows is my summer fundraising letter. By modifying one paragraph and the link in the last paragraph, you can use it with your NET cancer fundraising efforts. You have my permission to do so, as long as you use it for that purpose.  I have avoided using headers and the like to make the job of using it as easy as possible.

The Letter

Dear friend,

Jane’s death haunts me. I still wake up in the middle of the night, reaching for her and finding nothing there but a pillow. I still hear the words her doctor said the day she was diagnosed. I still hear the hospitalist telling me there was nothing more to be done.
 
I still remember telling her we were letting her die because there was nothing left to try 
 
Ten thousand people were diagnosed with NET cancer in the US the year my wife was diagnosed with that incurable and nasty form of the disease. Last year, 15,000 people got the same diagnosis. 
 
We don’t know why the numbers have shot up so dramatically in the last five years. Part of it may be more doctors are aware of the disease than was the case then. Part of it may be the new methods we have to detect it. Or maybe something else is going on. We just don’t know.
 
And while we have new treatments coming online to ease the symptoms of this rare form of cancer, we are not significantly closer to a cure than we were five years ago. Every new thing we learn about it seems to further complicate the situation. I increasingly appreciate the adage among NET cancer doctors: “When you’ve seen one case of carcinoid/NETs you’ve seen one case.” Too often, what we learn from one patient does not translate well to another.
 
But neither I nor the doctors and researchers are giving up. There are too many patients—120,000 of them—who desperately need a cure. They want to see their children grow up, see them graduate from high school, go to college, get married and present them with grandchildren. They want to grow old with their spouses and celebrate all those anniversaries Jane and I didn’t get.
 
So, once again this year, I will take on the 26.2 miles of the BAA Boston Marathon course on September 27 as part of the Jimmy Fund Walk. As always, every penny I raise will go to carcinoid/NETs research at the Dana-Farber Cancer Institute.
 
I’m not a scientist. I’m not a doctor. I’m not a researcher. I’m a man who lost his wife—a man who doesn’t want others to go through what my wife went through—the insomnia, the flushing, the constant, endless diarrhea that is the lot of too many NET cancer patients. And I don’t want anyone to go through what I went through then—or what I go through now.
 
We need your help. Please give what you can. Help us kill NET cancer before it kills someone you love.
 
Sincerely,
Harry Proudfoot
Chairman, Walking with Jane
 
p.s. Even if you can’t give, please share this with people you know.  

July Marathon Walk Update

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

Patients are counting on us.

… we have 16 Walkers officially signed up…

We have a lot to do…

Bits and pieces

I’ll be working…

…help with your online fundraising letters and notes.

If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what's your excuse for not joining us?
If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what’s your excuse for not joining us?