Category Archives: awareness

Money funds research–and we don’t have enough

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

Research costs money

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

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

Money is the root of it all

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

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

Weighing the voices

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

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

The myth of the secret cure

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

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

In the weeds

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

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

The cost or running one lab

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

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

What $15 million can buy

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

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

Increase the cash, increase research

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

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

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

One trial could be NET cancer key

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

The polio vaccine trial

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

…our most important resource…

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

One man’s trial

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

They took that risk.

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

A personal trial

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

He wasn’t a scientist…

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

The first time my universe changed

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

I didn’t know what polio was…

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

Jane’s personal trial

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

That trial meant I would never get polio…

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

Our most valuable resources

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

She wanted to beat NET cancer…

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

The power of one trial

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

…we need more than scientists and donors.

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

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

Patients too young to let dreams die

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

Dreams of a future die

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

Things are better than they were in 2010…

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

Dreams still nightmares

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

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

Dreams of greater awareness

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

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

Changing reality

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

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

Moving from dreams to reality

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

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

Delaying tactics, not cures

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

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

Diagnostic dreams could fuel a cure

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

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

Dreams of a simple test

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

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

Tomorrow is coming

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

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

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

 

 

 

 

Simple truths I face–Part 3

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

Simple beginnings

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

I will continue to write here…

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

The not-so-simple truth

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

The topic was a simple enough one.

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

Simple realities

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

…a symbolically fitting moment.

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

Simple emotional needs

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

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

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

Physical reality

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

I need time to mourn.

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

Simple truths emerge

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

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

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

The need for other voices

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

…some things I can begin fairly quickly.

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

A simple request

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

…we need more people to write…

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

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

 

Simple truths I face–Part 1

awareness, Goals

Simple truths at the beginning

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

These are all simple truths.

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

Simple truths of what was

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

I have faced some bitter and simple truths…

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

Simple truths of support

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

There were no lay-caregiver stories.

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

Learning new simple truths

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

I tried to fill that gap…

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

More difficult simple truths

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

We collected infinitely more spam than patients.

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

Missing simple truths

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

…experiences have begun to change.

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

Changing simple truths

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

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

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

Simple truths of healing

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

…science has changed the patient experience…

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

Unchanged and changed simple truths

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

…caregivers need to know they are not entirely alone…

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

Difficult simple truths

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

It was not a very big crowd.

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

Simple truths for the future

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

…we are far from having enough…

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

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

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

 

 

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.

 

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: concrete accomplishment–Part 2

awareness, Goals, Jane

Looking at accomplishments

I’ve spent a good chunk of my life involved in journalism. That fact has made me a pessimistic-optimist or an optimistic-pessimist, depending on the day of the week. When I look at anything, I see a mixture of the good and the bad. I tend, however, to look at failures before looking at anything that looks like an accomplishment. That is especially true when I look at what I’ve done.

We’ve done a lot to raise awareness…

So in my last post, I looked at where I’ve fallen short of what I proposed to myself five years ago. But I have to be realistic: Walking with Jane has put down a pretty firm foundation in all three of the areas I discussed there. We may have fallen short of the goals I set, but we have created a structure that may yet reach those goals.

Accomplishment 1: Walking with Jane

First, five years ago, Walking with Jane did not exist beyond a vague idea I sketched out on paper. I had no idea what was involved in setting up a non-profit. If I had, perhaps I would have thrown in with an organization that already existed. But my vision is very different from most and I don’t always play nicely with others when I’m trying to do something I perceive as important.

…I have to be realistic…

I don’t like asking if I can do something. Even small-scale bureaucracies make me crazy. I like the fact I can make a decision today and start making it happen tomorrow. Walking with Jane gives me that ability.

Weighing priorities

And yet, as recently as this month I seriously thought about closing up this shop so that I could focus entirely on 3-in-3: The Campaign to Cure NET Cancer, the new fundraising drive for the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. The leadership there talked me out of it because they seem to see a need for Walking with Jane as a separate entity from DFCI.

…I don’t always play nicely with others…

But the more I thought about it, the more I saw that need as a real thing. DFCI is not a small organization and that makes it less nimble. I can write about breaking news or fundraising events without going through multiple offices to get approval to do it. I can decide to do a fundraiser two months from now without going through any channels beyond my own mind.

Building on the accomplishment

There are problems with being a stand-alone organization, of course. The paperwork I face in the next few weeks between preparing for our annual board meeting and filling out the forms for the state and federal governments consumes a great deal of time and energy–as does the record-keeping after each fundraiser. And when things fail–and they do–I have no one to blame but myself.

…I seriously thought about closing up this shop…

But those problems are the price we pay for being able to turn on a dime when we need to. Still, we could do with more help–especially when it comes to running events, maintaining the website, doing the writing, the reading, and the 10,000 other things that demand attention every day. We have volunteers, but we can always use more.

Accomplishment 2: Building an image

Walking with Jane provides the structure that makes doing what we do possible. And we’ve worked hard to create a strong image of who we are and what we do. That begins with the name. Initially, someone suggested Walking for Jane–but that wasn’t who Jane was. I tell people she would haunt us for adopting such a name. Jane was more a “with” person–she didn’t like the idea of people doing things “for” her.

…we could do with more help…

The logo that adorns every page of the website, builds further on the idea of Jane’s strength and vision. It is based on a photograph I took of her in the Blue Hills just outside of Boston in the early 1990s. Bonnie Cohen, a former student of both of ours, created the image over the course of several days, working to get it just right. Some graphic artists have called it the most powerful logo they have ever seen.

…we’ve worked hard to create a strong image…

But image means nothing without concrete actions in support of that image. It can underline a message and inspire, but a successful organization needs more than that. It has to have not only a clear vision–but also plans and structures to make that vision a reality.

Accomplishment 3: The pamphlets

Our first step in that direction began even before we had the beginnings of a plan. On my flight to Seattle in December of 2010 the week after Jane’s funeral, I had drafted our first pamphlet, Is it IBS or is it NET Cancer? I sent that draft off to Dr. Jennifer Chan shortly after I got off the plane. By spring, the pamphlet was ready to go to press.

…the most powerful logo they have ever seen. 

Jen and I revised that pamphlet for the third time this fall. The new edition goes to press next month, along with our second pamphlet, NET Cancer FAQs, which Jen wrote this fall and which I finished the design work for this month. We previewed that pamphlet at the launch of the 3-in-3 Campaign on December 9.

Accomplishment 4: Social media

From the start, I knew we needed a social media strategy. In 2011, Facebook was already huge. But I had no idea how it worked or how to leverage it to raise either awareness or money. I still have no clue how to do the latter. I’m not sure anyone really does. But raising awareness was another matter entirely once I understood something of how it worked.

…I had drafted our first pamphlet…

I won’t pretend I fully understand how the thing works, but we can get the NET cancer message out to a pretty sizable audience through the combination of my personal page, the Walking with Jane page, and the various support group and interest pages. We’ve expanded to Twitter, tumblr, and Google+ and dabbled in Pinterest and Instagram since 2011. But it is hard to keep up with all of them on a daily–or even weekly–basis when there is only one of me trying to keep all of it in the air.

Accomplishment 5: walkingwithjane.org

Those first efforts on the awareness front were joined September 2, 2011–on what would have been our 22nd anniversary–by the launch of walkingwithjane.org. Carissa Broadbent‘s elegant design created a striking yet simple design that was easy to navigate as well as maintain, and avoided the clutter too many other websites force on readers. The website creates a place for long-form reporting that does not work well in social media.

…we needed a social media strategy.

The website was far from an instant success. After an initial four months of satisfying numbers, hits on the website went into a steep decline–a decline that eventually had me considering killing the website because it was taking lots of time to maintain with very little apparent impact or interest to show for it. Then, for reasons that remain unclear to me, things took off in April of 2013. We will close 2015 averaging over 2000 hits a month for the year.

Failure and success in November

In November, 2011, we put together a package of stories on NET cancer and made them available to newspapers and magazines across the country. Unfortunately, what we had hoped would be a huge coup caused barely a ripple outside of one local weekly and one local monthly. It was an effort we have not repeated since.

The website was far from an instant success.

Instead, the following November, we launched an 18-hour social media event we called a mediathon for NET Cancer Day on November 10. We posted new information, videos, and stories at about 15 minute intervals on walkingwithjane.org, Facebook, and twitter. The response was solid and we have repeated that effort each year since with steadily improving results.

Accomplishment 7: PSAs and videos

As part of that, we’ve put together a number of public service announcement videos that range in length from 15 seconds to nearly 10 minutes. At one point, we had a script on someone’s desk at CBS. Unfortunately, nothing came of that. And outside of the NET cancer community, the other videos have not found much of an audience.

…we have repeated that effort each year…

Those videos, as well as some other videos we put together, meant we needed someplace people could access them easily. Thus was the Walking with Jane Channel created on YouTube. I’d like it to do more than it does, but again, there are only so many hours in the day.

Accomplishment 8: Local media presence

While we still have not figured out how to reach the national media, local press coverage of Walking with Jane has been outstanding, thanks in part to Phil Devitt, a former student who is a rising star in print media. He now supervises a chain of several small weekly newspapers and has influence with one local daily. We’ve cultivated a relationship with the other local daily which is part of a different chain with a couple other papers in the immediate area.

…we had a script on someone’s desk at CBS.

The upshot is fairly frequent local coverage of what we are doing to fight NET cancer. And every story contains a short section on symptoms of the disease. Fall River and New Bedford may have the most NET aware public in the world as a result.

We’re ready for the next move

We’ve done a lot to raise awareness of NET cancer over the last five years, though we’ve had less impact than I’d like. Still, the structures are in place that make raising awareness in the broader community possible.

The upshot is fairly frequent local coverage…

How we manage that breakout is one of the things the next five-year plan will need to address.

When it comes to raising awareness about NET cancer, I'll go anywhere and talk to anyone. Last year, I did a series of presentations during a conference for student councils in Massachusetts and addressed a local Women's Club. That is one accomplishment I neglected to mention in the main article.
When it comes to raising awareness about NET cancer, I’ll go anywhere and talk to anyone. Last year, I did a series of presentations during a conference for student councils in Massachusetts and addressed a local Women’s Club. That is one accomplishment I neglected to mention in the main article.

Editor’s Note: This is the second part of a series looking back over the first five years of Walking with Jane and our goals for the next five years. The next part will look at our efforts to date to create more resources to support research on NET cancer.