If you can’t attend a NET cancer fundraiser, Giving Tuesday is a good time to support NET cancer research. Thoughts and prayers don’t fund a single research project–your donations can.
Shopping thoughts
Black Friday, people shopped. Their thoughts were focussed on the bargains to be had on gifts for loved ones. My thoughts, too, drifted to the bargains. I had tools to replace and some lights I wanted that went on sale.
…each of us can make a difference.
Small Business Saturday found people with a different set of shopping thoughts. I support small businesses near me all year in preference to the Big Box Stores and the online giants. But I went out Saturday to order a print for my living room. Later this week, I’ll make a trip to my local upholsterer to get a chair rebuilt Jane and I bought for our first apartment.
Cyber Monday grows every year–largely without me. But I understand the thoughts that drive the day. And I have a small personal stake in that Amazon sends some money our way every few months through the Amazon Smile program.
Giving thoughts
But today is Giving Tuesday–a day to move our thoughts beyond ourselves to the real needs of others. I’ll write a number of checks today–and not all of them will go to NET cancer groups, though that is a place I focus most of the year. There are homeless to house, hungry to feed, children who don’t have parents, students who need books, and a number of other rare diseases I’ve supported for decades.
…Amazon sends some money our way…
That said, though, NET cancer remains my lodestone. I’ve already written and mailed my checks to support the NET cancer program at Dana-Farber through the Walking with Jane Fund. That fund also supports the 3-in-3 Campaign as it heads into its final year. We are closing in on the $3 million goal we set for it. That money has earned us a new lab and greater support from the leadership at Dana-Farber.
NET giving thoughts
Today, I’ll send substantial checks to the Carcinoid Cancer Foundation and the NET Research Foundation. The first group does more for patient outreach and medical education than anyone–a job it has done for decades. The second focusses on funding research on a global scale. Both are worthy of your support.
…NET cancer remains my lodestone.
Historically, Walking with Jane’s focus has been supporting the NET cancer program at DFCI. We don’t yet take credit cards, so if you want to donate to us, you’ll need to print out a form and send us a check. Anything that comes in between now and January 1 will support my Marathon Walk or my PanMass Challenge ride in 2018. Officially, neither of those launches until January, but whatever I raise now for that will be matched up to a total of $7500.
Scholarship thoughts
Walking with Jane also funds five scholarships to students working to become science teachers or enter the medical professions. Each year, we present a four-year, $1000 a year scholarship to a graduating senior at Westport High School. The student is chosen by the science department there. We also present an annual $1000 scholarship to a student at Bridgewater State University, Jane’s alma mater. They have a committee that chooses the recipient.
Both are worthy of your support.
I’d like to do more than that. A $1000 today is not a huge chunk of money. If enough people made enough donations earmarked for scholarships, I’d increase the size of scholarships we give. My own finances are stretched as far as they can go.
Think–and give–regionally
There are a number of other NET cancer foundations working regionally to support NET cancer programs near them. I’m know every regional NCI cancer program that has a NET cancer program in it could do with your support as well. The truth is every NET cancer research program is hungry for the money to fund their research. Things are better than they were 10 years ago, but that doesn’t mean they are good. We still have too little money to fund the research we have to have if we are going to fund a cure. Another good NET cancer foundation to give to is The Healing NET Foundation. They have a $1000 match going today.
I’d like to do more…
Please, wherever you are, do what you can. It’s Giving Tuesday and each of us can make a difference.
We raised just over $5000 last month with a dinner fundraiser. That’s not a lot of money compared to what we ultimately need–but with the slim funding we have, every dollar counts.
Money remains too scarce in 2017
Money was a problem in 2010. The amount researchers had to spend amounted to less than we spent on Jane’s treatment in the four months from her diagnosis to her death. Jane telling her doctors to study her the best they could, in some ways, doubled the research money for the year.
Grants run out and have to be replaced.
Money remains a central problem for NET cancer seven years later. Yes, we have 10 times as much research money now as we did then. Yes, we’ve seen significant increases in money for clinical trials from pharmaceutical companies and other sources. But we need to find more.
Funding for research
We still spend far less on NET cancer than we need to. The disease is complicated in ways no one saw coming. Just growing tumors in test tubes has proven insanely difficult. Mouse models have proven largely pointless. The tumors often grow so slowly the mouse dies before we can get useful information from it. The DNA shows no major attackable weaknesses.
Money remains a central problem…
Our efforts seemingly remain largely limited to finding ways to slow the disease and ease patient symptoms. Yes, we’ve found better scanning techniques. Yes, we have a trial of one variety of immunotherapy going on at this moment and another variety in the works. But much of the last seven years has remained devoid of curative ideas. This is not to belittle the substantial efforts to find ways to alleviate patients’ symptoms. Quality of life very much matters–especially in the absence of a cure. But we should not have to choose between one or the other.
Funding for awareness
The lack of money has also hampered our efforts to educate primary care physicians about the NET cancer. Our first priority has been finding ways to help patients who know they have the disease. But we have no real idea how many additional cases we are missing because of simple ignorance. As I’ve written before, not only can we not detect what we don’t suspect, but doctors can’t suspect what they have not heard about.
The disease is complicated…
And too many primary care doctors have not heard of NET cancer. NET cancer patients outnumber brain cancer patients in the US by a significant number. Every doctor in America knows what a brain cancer is. Too many don’t know what NET cancer is. And too many who do know so little about the disease that they say things like, “You have a good cancer too have.”
The next round
We can’t deny that NET cancer research is much better funded today than it was even seven years ago. But we still have less funding than what amounts to a rounding error on many other forms of cancer. We need sufficient funding to mount and maintain a more serious basic research effort than we have today. We need sufficient funds to continue to find and test new treatments and new diagnostic tools. And we need sufficient funds to ensure that every primary care doctor comes to know NET cancer for the menace it is.
…doctors can’t suspect what they have not heard about.
So for all the improvements in funding we have seen in recent years, we have to do more. Grants run out and have to be replaced. Much research that we need to do goes unfunded because we can’t afford to fund everything that needs funding. And awareness campaigns for both doctors and the general public need not just planning, but the resources to carry them forward. For all the problems we have solved in the NET cancer community, this one remains very much on my mind.
Most people on our Jimmy Fund Walk teams rely on small donors to reach their minimum $300 goal. Finding those donors helps increase public awareness of the disease.
Public awareness strategies key
I spent yesterday in Boston in a variety of meetings about NET cancer fundraising and awareness. My morning meeting involved discussions about a potential NET cancer awareness event in the city sometime this spring. We talked about both an awareness walk and doing a series of “table” events in various locations in various cities with an eye toward reaching out the general public about the disease.
We need to do a better job…
While we’ve made too little progress on educating primary care doctors about NET cancer, we’ve done an even poorer job of reaching the general public. Some would argue that awareness doesn’t matter very much. I have to disagree, for two reasons.
Not as rare as we thought
First, NET cancer is not the insanely rare disease we thought it was even ten years ago. It has not yet achieved the level of a public health crisis–and likely won’t. But we’ve seen explosive growth in diagnoses over the last six years–an increase of about 2000 cases very year from 2010 to 2016–the last year for which we have statistics.
…reaching out the general public about the disease.
In 2010, we diagnosed about 10,000 cases in the US. By 2016 that number had swollen to 21-22,000 cases a year. In 2010, we had about 105,000 people living with a NET cancer diagnosis in the US. Today, that number tops 171,000. The number of people with the disease who have not had a NET cancer diagnosis yet is a matter of debate. Some doctors, privately, talk about 250,000 additional cases. Others, again privately, put the number far higher than that.
Implications of larger numbers
What we do know is even the small improvements in PCP awareness combined with the arrival of the Gallium-68 scan have unveiled a substantial number of new cases. We are closing in on the kinds of numbers that will end NET cancer’s legal status as a rare disease–as a true zebra. Much NET cancer funding is tied to that status.
…not the insanely rare disease we thought…
If NET cancer is, as appears increasingly likely, a significantly more widespread form of cancer than previously believed, people in the general population need to be made more aware of that fact. To do otherwise would be immoral. People in general need to know the symptoms the way they know what to look for to catch breast cancer at an early stage. Early diagnosis is critically important with any cancer. Public knowledge and awareness increases the chance of early diagnosis.
Solving the funding riddle
The second reason we need greater public awareness has to do with funding. We are currently too reliant on major private donors–those who give over $20,000 a year. One-third of the funding for basic research over the last two years has come from a single grant. When that grant ends in 2018, my understanding is that money is gone. There is no renewal option beyond that. We’ll need to find a way to replace that money or watch research funding–and research–shrink.
People in general need to know the symptoms…
About 20 percent of the money raised by 3-in-3: The Campaign to Cure NET Cancer, the funding campaign I chair for the Dana-Farber Cancer Institute’s NET cancer program, comes from small donors. We know we can count on that money year-in-and-year-out. The other 80 percent comes from major donors. The loss of a single smaller donor is generally fairly easy to replace. The loss of a single major donor can mean an entire line of research dies for lack of funds. The addition of a major donor can open an entirely new line of research.
Every donor matters
We need to keep major donors in the mix–honestly, we need to keep adding them. But we need to do more to cultivate the small and medium size donors more than we currently do. People don’t–can’t–donate to causes and diseases they have never heard of. They don’t donate to things they don’t feel a connection to. Nor do they encourage government and institutional spending on those things.
We’ll need to find a way to replace that money…
We need to do a better job of reaching out to the public at large about NET cancer. We need to do so for the sake of their health. But we also need to do so for the research funding they can help supply.
Raising awareness–or money–requires an effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas. An awareness walk in Boston seems a good next step.
A simple idea
Gordy Klatt had a simple idea in 1985. He was a doctor who’d seen one too many cancer deaths to sit on the sidelines. So he went to a track in Tacoma, Washington and started to run. He ran and walked for 24 hours. Friends and family supported him from the sidelines as he garnered pledges to the tune of $27,000.
…it is a puzzle we need to put together.
Somewhere in that 24 hours, the germ of the idea for Relay for Life was born: teams walking a track and raising money and awareness for the cancer cause. The American Cancer Society built a fundraising powerhouse from that idea–and arguably spawned hundreds, if not thousands, of team-based fundraising walks.
For most of those walks, we walk as Walking with Jane. But we do the Jimmy Fund Walk as the NETwalkers Alliance. That team is part of the second most successful Jimmy Fund Walk Group, #cureNETcancernow. Our bike team this year called itself the NETriders Alliance. Whether that name stays remains to be seen.
The walk we don’t have
What we don’t have is a NET cancer specific walk. Such walks–and even runs–do exist, but they are hardly as ubiquitous as walks for MS or Cystic Fibrosis, let alone Relay for Life. The closest such walk I know of is in New York. That’s a bit longer drive than I want to undertake for a 5k walk.
My friends and I participate in many walks…
The idea for a NET cancer awareness walk in Boston has kicked around the inside of my brain for a couple of years. Wednesday morning, if all goes as planned, I’ll pitch that idea to some of the people who run the Jimmy Fund Walk. I’ll seek their guidance and support for the project.
We need help
I know one of the first things they’ll ask is how many local volunteers we can get for the project. We’ll need people to help plan the route, figure out where to put support stations, and deal with local government to get permits and police. We’ll need day-of volunteers as well as people to work on the steering committee.
I know some day this spring or summer, I’m going for a walk in Boston to raise NET cancer awareness. I don’t want to plan that walk alone. And I don’t want to walk it alone. If you are in the Boston area, we need your help. Consider your markers called in.
Raising the stakes
This represents just one of many steps in putting NET cancer in the national consciousness. We need the average person to know NET cancer exists at the same level they know that brain cancer or ovarian cancer or cervical cancer exists. We need people to know it exists the same way they know MS or ALS exists.
There are many pieces to that puzzle–and this is just one of those pieces. But it is a puzzle we need to put together. Recent advances show this cancer affects many more people than we imagined just seven years ago. Without broader awareness in the general population we will never have the resources to help change the lives even of current patients.
I had a very specific mission and role in mind for the Walking with Jane when we started. No one, beyond those afflicted with the disease, seemed to know the disease existed. Basic research lagged for lack of money. Too many patients were stuck with doctors supervising their care who knew less than the patients about the cancer they faced.
Lives depend on it.
My plans to quickly create a national organization on the scale of the Cystic Fibrosis Foundation or MS Foundation were overly ambitious. I quickly discovered that fundraising, raising awareness, writing pamphlets, keeping up with the latest research and maintaining a comprehensive website each required my full-time attention. I could recruit people to do pieces of those jobs periodically, but the brunt of the effort fell on me.
Evolving the mission
And I was mired in my own grief and the effort required to maintain the place I lived. I learn slowly, but I eventually realized my initial vision could not be reached in the timeframe I imagined. Instead, I envisioned a loose coalition of regional foundations each aimed at developing a relationship with specific NET cancer centers in order to support both research and awareness.
Too many patients were stuck…
I don’t know if that idea is any more workable than my original thought. Increasingly, however, I’ve come to see Walking with Jane as a pilot project to demonstrate how such a partnership with a regional cancer center might work. Over the last 15 months, I’ve begun to see the first fruits of that vision. I detailed the major successes of that partnership in yesterday’s post.
Mission goals for 2017
The purpose of today’s post is to lay out our goals for Walking with Jane and that partnership in the year ahead, and sketch out a rough plan for what we will do to make those goals a reality. Those goals lie in three specific areas: fundraising, awareness, and evangelism.
…I’ve begun to see the first fruits of that vision.
Evangelism, for lack of a better word, is the toughest unaddressed nut we, as a community, face. We’ve made significant strides since 2010 in making medical professionals more aware of NET cancer. New patients have a range of real and online support services available that were hard to find even where they existed six years ago. We do a decent job of helping patients find those resources that exist. And fundraising in the US has improved markedly.
The unspoken mission
But outside of medical schools and NET cancer patients and their caregivers, NET cancer remains largely unknown. This fall, I did five craft fairs, all in the same local area. Despite almost annual local newspaper coverage, I encountered no one who had heard about NET cancer from anyone other than me. As compelling as people tell me Jane’s story is, even locally, we haven’t gained much traction in the world outside the NET cancer community.
…fundraising, awareness, and evangelism.
Honestly, I’m not sure how to raise general awareness of NET cancer in the mainstream community. I’ve written scripts for PSAs–even produced two or three over the last few years–to no visible effect. I’ll write some scripts for radio and try to get them aired on college radio stations in the University of Massachusetts system this year, hoping they get picked up elsewhere as a result. It’s slender reed to hang much hope on, but it’s the reed we’ve got.
Finding other reeds
As part of the 3-in-3 Campaign, we’ve also put together a speaking program aimed at the general public that we originally designed for potential corporate sponsors. I plan to put out a letter this month to civic groups around New England to prospect for groups willing to listen to that message. I think it would travel well, if you know of a group that might be interested.
…I’m not sure how to raise general awareness…
I’m also working on grant applications to get the latest editions of two pamphlets I’ve written with our friends at the Dana-Farber Cancer Institute into the offices and hands of every doctor in New England, for a start. If I can find the funding, we’ll reach out beyond that. If we could get those pamphlets into a position where even non-NET patients could see them, we might increase name-recognition, which would help with the evangelism piece, as well.
The awareness mission
Equally important is the need to continue to raise awareness about NET cancer and the latest treatments and research among doctors and patients. The distribution of those pamphlets really has as its central purpose that kind of awareness. But there are other things we can do to improve that side of things, as well.
I’m also working on grant applications…
One of my real failures the last couple of years has been maintaining the non-blog portions of this website. Too much of what is on the other pages is dated. Over the next three months, I’m going to go through the site and do some extensive renovations to the information and links that are here. That will include linking some of the most useful blog posts here and elsewhere that underline patients’ real experiences with the increasing number of treatments and trials underway.
Repair and revision mission
Some of the most referenced blog posts are not things I wrote. Virtually every day, for example, someone accesses the piece written by a patient about their personal experience with chemo-embolization for liver mets. It is among the first things people see when they google that procedure.
But there are other things we can do…
Frankly, we need more posts like that. Patients and caregivers both are thirsty for that kind of information. So here’s my invitation: if you have an experience with a specific treatment or trial, write it up and send it to me at walkingwithjane@gmail.com. I’ll work with you to make it the best it can be. Then we’ll post it here on this blog and create a link for it from a page on treatments people have experienced.
Changing reality
If you have already written such a post somewhere else, send me a link and I’ll look at it with an eye to including it. I’m particularly interested in experiences with PRRT in the US and telotristat globally. Pieces on Afinitor would also be useful, as would experiences with various types of surgery. I also plan to expand the links we already provide to other blogs
Patients and caregivers both are thirsty…
And we all need to tell our stories to the broader community whenever we get the opportunity. That can take the form of talking to your local newspaper or TV station, talking to church and civic groups, or just sharing our stories with the people in the neighborhood. Nothing will change without each of us being the squeaky wheel.
The funding mission
Both evangelism and raising awareness will help with the third piece of the NET cancer cure puzzle: fundraising. People don’t give money to causes they’ve never heard of. And research costs oodles of money. One small lab costs close to $3 million a year to run. Drug companies will pay for drug trials, once they are convinced the drug will work. Governments will pay for research when they are sure of the outcome. But basic research funding comes from individuals–and virtually no one else.
…we all need to tell our stories…
Over the last few years, Dana-Farber has worked on unraveling the NET cancer genome. They collected over 1000 specimens from NET cancer patients and analyzed the DNA of each. Neither government nor pharma put up the money for that effort. That came from people like me and you. Our Jimmy Fund Walk teams raised a piece of that money, $100, $50, $25, even $10 and $5 at a time.
Raising the stakes
Last year, the 3-in-3 Campaign raised about $1 million for NET cancer research. Next year, we need to raise another $1.5 million to help fund the new lab that $1 million inspired. Getting there won’t be easy–but nothing worth doing ever is.
And research costs oodles of money.
The 2017 Jimmy Fund Walk registration begins January 4. I’ll spend that January 4 setting up the NETwalkers Alliance team page and the #cureNETcancernow group’s page, as well as my personal page. I’ll set my personal goal for the Walk at $15,000 this year. Our team goal we’ll set at $100,000. Our group goal will be $250,000. I’m hoping to double the $160,000 we raised last year, but will wait on moving that number up until I have a clearer picture about where things are.
Extending my personal mission
My personal Walk goal is a bit lower than it usually is. That’s because I’ll create a NETriders Alliance team for the PMC Challenge this year. My hope is to gather together people who ride bikes rather than walk, to raise money that way for NET cancer research. I’ve never been one to lead from the sidelines, so… And just like in the Walk, every penny I raise will go to NET cancer research. Last year, people riding for NET cancer to support the research done by the Program in Neuroendocrine and Carcinoid Tumors raised about $50,000 total. My hope is we will double that amount this year.
Getting there won’t be easy…
In addition to my annual pledge, the Walking with Jane Fund for Neuroendocrine Cancer raised another $1700 last year. I’ll work to publicize that fund more widely over the next year, in hopes of doubling that amount in 2017.
Expanding the mission
And I’ll continue to work with groups of patients and caregivers who are also actively raising money for NET cancer research. I’ll expand the number of craft fairs I present at and expand the range of hand-crafted items we offer, with every penny of every purchase going to NET cancer research. I’ll write fundraising letters and share them with anyone who wants to use them. I’ll help organize and/or attend and/or speak at events to raise money and awareness for NET cancer research anywhere within driving distance–and for the right return on investment I’ll go further.
My hope is we will double that amount this year.
In 2010, we raised under $2 million to support NET cancer research in the entire US. In 2017, we need to raise that much in New England alone. We need to see that kind of continued improvement in every region in the country–and at the national level as well.
Slaying the dragon
I’ll do everything I can in the year ahead to make all these things happen. For six years, my mission has been the defeat of this disease. But I am only one person. We need every person who has ever suffered the loss I have, to make it their mission. We need every patient with a story to tell to do likewise. We need every caregiver to do likewise. We need to inspire every doctor, nurse and researcher to do likewise.
…I’ll go further.
Together, we can slay this dragon. Lives depend on it.
We could not do any part of our core mission without the volunteers who run our fundraisers, stuff envelopes and manufacture hope. We gather that core group together every summer to celebrate our successes.
2016 was a busy year, both for Walking with Jane and for me personally. As an organization, we made significant progress on a number of fronts, but lagged behind where I would like us to be in other areas. As an individual, I continued to struggle with my personal demons. Again, there were moments of significant progress—and moments of stagnation and regression. Grief continues to hammer at my heart, but the blows are softer and less frequent.
…a future with less hurt and more hope in it
As many of you know, Dana-Farber asked me to get involved with a fundraising campaign aimed at NET cancer in late August of 2015. We launched that campaign December 9 of last year with a presentation in Boston. I now officially chair that campaign–3-in-3: The Campaign to Cure NET Cancer. Our goal is to raise $3 million over three years for NET cancer research. As this year drew to a close, we were closing in on our first $1 million. That work has taken me to Boston on a regular basis to meet with doctors and researchers and professional fundraisers to help plan and execute that effort. It’s been a positive learning experience.
NETwalkers and #cureNETcancernow
Part of that effort involved, as always, our NETwalkers Alliance Jimmy Fund Walk team. For the first time since I took over as captain, I was not the top fundraiser on the team. That honor falls this year to Jenaleigh Landers, who has been there from the start. Her golf tournament in memory of her father has always put her in the second spot in recent years. The tournament was even more successful this year. Total, our relatively small team raised just over $39,200.
…closing in on our first $1 million.
In addition, we helped launch the first disease-specific Walk group, #cureNETcancernow. The group had four teams and raised just short of $160,000 for NET cancer research. We had nearly 200 NET cancer walkers join in that effort. Only the Dana-Farber employees group had more team members or raised more money—and most of the other groups were run by major companies like State Street Bank.
Ups and downs of a start-up effort
The result of those efforts—and those of a number of people riding for NET cancer research in the Pan-Mass Challenge–is Dana-Farber adding a new gastrointestinal research lab whose primary focus is NET cancer. We were also listed among the funders for a paper on NET cancer co-authored by Dr. Jennifer Chan, who was Jane’s oncologist at Dana-Farber.
…we helped launch the first disease-specific Walk group…
But tasks connected to the 3-in-3 Campaign forced me to cut back on some of the other things Walking with Jane has done over the last five years. Normally, I do two mailings a year for that, neither of which happened. I went three months without posting anything new on our website. Other things slid as well. Start-ups always take more energy than I anticipate, but I hope to get back to a more regular schedule on these other things soon.
Personal successes and losses
Not all of that had to do with the Dana-Farber campaign, though. On the good side, I spent six weeks again this summer teaching journalism fundamentals to high school students in a summer program at BU. The commute is a killer, but working with young people reminds me there is more to life than cancer.
Start-ups always take more energy than I anticipate…
And I needed that reminder especially this year. Two good friends were diagnosed with cancer this spring. Both are in treatment and doing well, by all accounts. But I also lost two NET cancer patients over the summer I had become close to. Their deaths underlined again for me why what I am doing matters—and why I need to keep doing it.
Keeping myself sane
I continued my ongoing landscaping and other house projects. The yard still looks like it’s under construction–because it is–but I finished the patio project, the back half of Jane’s memorial garden and the garden, back, front, and side pathways. I also got a good start on installing a small orchard and another pair of garden beds, while repairing the sinkholes that developed just after Jane died. I’m doing it all by hand, one shovelful at a time, which keeps me in shape and gives me a break from all the mental exercise my other projects force on me.
…why I need to keep doing it.
Indoors, I redid the dining room and bedroom and have a clear vision of what the finished study will look like. I took Jane’s chair in last week to be re-upholstered for that room. Two-thirds of the basement is cleared out and, in the next month or so, I hope to have the electrician in to do some wiring down there.
A year of rediscovery
I’ve also done a ton of reading, some of it related to cancer, but much more of it just for fun. I’ve rediscovered photography, done some writing, done some walking, lost 30 pounds, put 15 back on—bloody post-Marathon issues continue—and tried to build a life that makes sense again. Life feels both more and less empty.
…one shovelful at a time…
The sixth anniversary of Jane’s death was December 10—and it was awful. But I put up the tree for the seventh time without her and I felt good afterward. Somehow something lifted off of me and I felt like a human being again. Maybe Year 7 will finally see me healed enough to think about a future with less hurt and more hope in it.
I hope this finds you and yours in good health and spirits and that the year ahead will prosper you in ways great and small—and in ways you don’t see coming. Go have an adventure. I hope to have several.
Pax et lux,
Harry
Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.
I think I need some help. This challenge has reminded me how difficult–and how undermanned–our fight against NET cancer remains. I write pretty quickly, but each of these posts represents at least three hours of writing time. Then I spend another hour putting in links, break-heads, and pull quotes before posting it to various pages and support groups. And often, before I write, there is research that needs to be done.By the time even one of the shorter pieces is ready for your eyes, it has 4-5 hours of work in it. I’ll spend another hour or two fielding comments and thanking people for sharing pieces every day.
If you’re interested, let me know.
I needed to update this website this month, as well. In reviewing what we have, I realized that most of the information on the other pages here is over a year old. I need to find the time to look at more up-to-date videos and check to see which links to other pages still have value–or still work. And lists of foundations and blogs and cancer centers all need updated as well. Gradually, I’m beginning to understand why most foundations and organizations have at least one person–and often more–doing nothing but social media and website stuff.
The fundraising challenge
But maintaining this website and keeping up a social media presence are not all I have on my plate. Walking with Jane tries to average one fundraiser every month. Most of those require a press release for local media outlets. Most also require I design and print posters and get them up in local businesses. Many events require tickets get designed and printed as well. Money gets counted and taken to the bank. The bookkeeping required even for an organization as small as Walking with Jane, makes me crazy.
I needed to update this website this month…
Then, we do three mailings major mailings a year and three smaller ones. Our holiday mailing works purely to bring people up to speed on what we’ve done over the course of the year. The other two major mailings prospect for individual donations to our Jimmy Fund Walk effort. The smaller ones recruit crafters and others for our annual yard and craft sale–and sponsors for events like our Jimmy Fund Walk t-shirts and our miniature golf tournament. I craft every letter and every envelope gets stuffed by hand. More bookkeeping follows.
Other WWJ challenges
Next, we go prospecting for grants to help fund the awareness piece. Next year, we hope to send out copies of two pamphlets to every primary care doctor in New England about NET cancer. If we can find the funding, I’d like to reach every primary care doctor in the US and Canada. I’d go beyond that if I could find the money and someone to do the translations.
…we do three mailings major mailings a year…
Throw in Form 990, an annual board meeting, several craft fairs, a summer gathering for volunteers, and you begin to see the scope of the challenge on just the Walking with Jane front. But I have other NET cancer irons in the fire.
The Dana-Farber challenge
I also chair 3-in-3:The Campaign to Cure NET Cancer for the Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors. I meet with doctors and staff there once a month to plan and execute the various parts of that effort. That has included designing a presentation aimed at businesses, civic and fraternal organizations. We are also creating brochures and public relations materials. A series of podcasts may happen next year. We also look for other ways to raise awareness of NET cancer and the latest research.
…we go prospecting for grants…
That work also involves serving as group leader for the #cureNETcancernow group and captaining our NETwalkers Alliance team for the Boston Marathon Jimmy Fund Walk. Next year, I will also take on at least part of the Pan-Mass. Challenge as we try to start a Program-focussed team for that biking event. Fortunately, some overlap exists there since much of the fundraising we do goes to support Walkers on our teams.
The training challenge
Of course the Walking–I do 26.2 miles every year–and now the biking, require year-round training at my age. I do more in the spring and summer than I do in fall and winter, but I try to get some vigorous exercise every day. In the summer, I try to do at least one 20 mile hike a week, leading into the Marathon Walk at the end of September.
I also chair 3-in-3…
I also try to spend some time every week talking individually with NET cancer patients and monitoring the various support groups. I try to read a few NET cancer blogs each week as well. And, of course, I have the scientific papers to wade through.
The life challenge
Meanwhile, I somehow find time to have something that looks like a life. I work on the landscaping, spend time in my garden, read what Jane used to call “mind-candy,” and take some photographs. I like to cook and bake my own bread. And I write things other than NET cancer posts and try to keep up with what is going on in the outside world.
…I do 26.2 miles every year…
So it’s no wonder I always feel like I’m running behind. I’m clearly trying to do too much. And yet, I can’t see any way to drop any of this. It all needs doing and most of the people I know who could help have equally daunting schedules in front of them. We all do what we can.
Can we get a little help here?
Now if you’d like to get involved with any of this stuff, I need whatever help I can get. Some people have written pieces about their experiences with various therapies. Others have sent me their crafts to take on the road to the various craft shows I attend. All the money from those goes to NET cancer research. I have friends who come in to stuff envelopes a couple of times a year.
I’m clearly trying to do too much.
Interested? Let me know. You can reach me at walkingwithjane@gmail.com. As one of our ministers used to say, “Many hands make light work.”
We try to average one fundraiser every month. That is just one challenge involved in ou fight to fund NET cancer research.
Jane would be 62 today. She would have awakened to a birthday card, presents and breakfast in bed. That breakfast would have included tea and chocolate croissants. Later, flowers would have arrived and we would go to lunch at a favorite restaurant.
Happy Birthday, darling.
Instead, I’ll visit her grave. I will leave flowers, a card, and three small stones–one for her, one for me, and one for us. My life has a gaping hole in it I think sometimes no one sees but me. I work on NET cancer, I comfort the afflicted and afflict the powerful. I live the best life I can. But there is too little joy in it.
The birthday present I wish I had for her
What I really want to give Jane for her birthday next year is a cure for NET cancer. I want us both to smile at that reality. It hasn’t happened this year–but we’ve made some progress that gives me some small hope. Our understanding of the disease gets better every year, though it seems we will need to find some new approaches if what we are seeing be true.
Instead, I’ll visit her grave.
The money we have for research continues to grow with each passing year. The year Jane died, we spent less than $2 million on the basic research that creates cures. This year we have $15 million to spend in the US. A year ago, we were preparing the launch of 3-in-3: The Campaign to Cure NET Cancer at the Dana-Farber Cancer Institute. Between now and early December, we should reach our first $1 million in our effort to boost funding for the Program in Neuroendocrine and Carcinoid Tumors at that institution.
Birthday presents in my heart
On November 1, thanks to that effort, Dana-Farber created a new lab for gastrointestinal cancer that will have NET cancer as its primary focus. Our Boston Marathon Jimmy Fund Walk teams raised over $156,000 as part of that campaign. Riders in the PMC Challenge raised nearly another $50,000. And next year, we will do better.
This year we have $15 million to spend in the US.
Private donors outside those two groups will have contributed another $800,000 when all is said and done. Some of those donations are big; some are small. Every one of them counts because every dollar brings us closer to the understandings we must have. Patients deserve to live full and normal lives without NET cancer hanging over their heads.
The next birthday
At Dana-Farber, we need to build on that success. By Jane’s next birthday, I hope we’re talking about a $1.5 million addition–or more–to what we raised in this first year. I’d be thrilled if the three-year goal were reached in two. But it won’t happen without help from lots of other people who are not yet involved.
…a new lab for gastrointestinal cancer…
And we need to replicate the success of 3-in-3 at other NET cancer centers, both in the US and abroad. We need to turn that $15 million we raised for NET cancer research nationally this year to $30 million next year. To do that, we need every support group and small foundation to do whatever it can. For some of us, that will be as simple as writing a check. Support your local cancer center’s program or larger umbrella groups like the Carcinoid Cancer Foundation or NET Research Foundation.
Creating the NET future
For others, it may be organizing a NET cancer Walk or piggybacking onto a larger and more publicized event with a team or group of teams that earmarks their money to NET cancer research. Still others may run craft fairs or dinners or other events aimed at raising money for NET cancer and raising awareness about the disease in their community. And still others may find other ways, like selling candy bars or going door-to-door to share their story with their neighbors.
…we need to build on that success.
We need both patients and caregivers to understand the importance of taking part in trials–not only for their health, but for the health of others. Jane said, “I want to beat this–I want to be the first person to beat this. But if I can’t, I want doctors and researchers to learn everything they can from me about this disease and how it works.” There are times I wish she had let herself go earlier. But I know what we learned because she kept fighting was worth the extra pain she went through to get it. She was–and is–my hero because of that.
In our hands and in our hearts
What we do and how much money we raise as individuals matters less than doing all we can to take control of our own disease. After five years of working in this vineyard, I know how much–and how little–we can expect from the federal government and the major cancer charities. We have to realize that we are MS, we are ALS, we are Cystic Fibrosis–and take our future in our own hands whenever–and wherever–we can.
She was–and is–my hero…
The future of NET cancer research, the future of NET cancer treatment, the future of a NET cancer cure rests in our hands. If we don’t lobby for increased government spending, no one else will. If we don’t do the spade work to raise private money for research, no one else will. If we don’t volunteer for trials, no one else will. We are all walking with Jane–and none of us walk alone.
Happy Birthday, darling.
One of the things we might have done on Jane’s birthday is go watch the waves come in on the beach. But we need to build a different kind of wave to find a cure for NET cancer.
I buy the occasional MegaMillions and PowerBall ticket. I know the odds of my being struck twice by lightning are better than my chance of winning. But it’s not like I’d keep the money for myself–at least not very much of it. I might buy a tiny condo in the city so I wouldn’t have to drive quite so far quite so often.
…what we really need is a March of Dollars.
But I’d really like to buy a cure for several diseases–first and foremost, NET cancer–and that’s where the money would really go. It’s where every spare dime goes now. I’d just like to have a lot more spare dimes.
Leveraging what I have
I’m not wealthy. I live frugally and try to spend wisely when I buy something. I’d rather pay for a good chair and never have to replace it than a cheap one I have to replace every five years. I push my own lawn mower, bake my own bread, raise some of my own food. It all creates money I can spend on the things that matter.
…I’d really like to buy a cure…
And where I can, I increase those donations by leveraging them to create more money. I’m a decent photographer, so I make limited editions of my best work. I frame them and sell them at craft fairs. I take items other zebras and their friends make and take those items with me as well. Every penny that comes in goes to fund NET cancer research.
Other methods I try to use
My friends and I put on dinners and golf tournaments and other events, each of which doubles or triples the initial investment. I write letters and send them to people I’ve never met, hoping they will be moved to make donations to the cause. I give speeches I hope will move people to open their wallets.
I’m not wealthy.
I’m trying to write a book about grief. It isn’t going very well. Last year it left me in such a funk I had to walk away from everything for a while. Reliving the end of Jane’s life and coming to terms with her death is still too painful to deal with in large doses. But when it is done and finds a publisher, half of what it makes goes to NET cancer research. The other half helps a grief group keep going that has helped me get through the roughest parts.
Turning thousands to millions
I put solar panels on my roof last winter. The company that did the work offers me $1000 for each person I get to sign on with them. I think solar is a good idea whether people believe in climate change or not. Burning coal isn’t good for my lungs–or anyone’s. Any bounty I get from them is already pledged to NET cancer research. No one has taken the bait yet…
I write letters and send them to people I’ve never met…
Fourteen months ago, the NET cancer program at the Dana-Farber Cancer Institute asked me to volunteer to chair a major fundraising campaign for NET cancer research there. The goal is to raise $3 million over the course of three years. From the perspective of someone whose annual income never reached $70,000, $3 million feels like a lot of money.
Buy big by buying small
From the perspective, however, of someone who has seen what research costs, it’s a mere starting point–and nowhere near what we really need to raise. There aren’t a lot of people with deep pockets out there interested in NET cancer, so I know an awful lot of it has to be raised a few dollars at a time.
…$3 million feels like a lot of money.
When my grandmother came to Massachusetts for the first time, she insisted we take her to see the USS Constitution, which lives in Boston Harbor. She told us that, as a small girl, she had donated her milk money to restoring the ship. She wanted to see what her investment had bought.
One person at a time
In the late 1950s, I went door-to-door in my neighborhood, collecting dimes from our neighbors for the March of Dimes, FDRs plan for defeating polio. Today, no one would allow an eight-year-old to do such a thing, but it was how we defeated polio.
…a few dollars at a time.
I think of those two events frequently as I write my letters or sit behind a table at a craft fair. Two weeks ago, I spent eight hours raising $75. I had two conversations about NET cancer that raised awareness in four people who had never heard of it before. I handed out another five pamphlets on the disease.
A March of Dollars
It wasn’t much for an eight-hour investment. But it was $75 more than we started with and at least another nine people who heard about NET cancer. Even counting in inflation, it was a lot more than I raised in my eight hours of knocking on doors in 1960.
…it was how we defeated polio.
But what we really need is a March of Dollars. If we could get just $1 from every person in the US, we’d have more than $325 million for NET cancer research. We solved the riddle of polio for less than that a year. Maybe we could buy a NET cancer cure for that.
Mailings are labor intensive but can net as much as $6000 for a $600 investment. I don’t buy what my friends and I can do ourselves.
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 amounts of money.
