Mission remains: cure NET cancer now

Original mission

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.

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.

Posted by walking with jane on January 3, 2017

4 responses to “Mission remains: cure NET cancer now”

  1. edebock says:

    Have you heard anything about a new treatment being tested in Sweden that uses a genetically modified cold virus? I just read about it on the NET Cancer Day Facebook page. It sounds rather far fetched to me, but who knows what the answer to beating this disease will look like?

    • They’ve been working on this in Sweden for several years. They crowd-funded an initial trial, which I believe has finally started. Getting all the necessary approvals took quite a bit of time, since people are terrified of a virus going rogue. I know it worked in the petri dish. Whether it will work in people remains to be seen, but there are a couple of oncoviruses being worked on both in Europe and here. Progress with them is very slow, but I’ve had my fingers crossed on this one. The guy in Sweden does have credibility with other NET cancer researchers, so it may not be as far-fetched as we might think.