Category Archives: Goals

Garden lessons for NET cancer

Goals, Marketing NETs, Uncategorized

Creating seedlings for the summer garden

It’s snowing again in southern New England. We’ve picked up another eight inches today so far. We could end up with as much as a foot by the time this storm drifts away sometime tonight. I cleared six inches from the driveway and walk about two hours ago. I’ll have to go out again in a little while to clear them again.

…even the answers we have are not very good ones.

Ten days ago, I planted some perennial seeds for this year’s garden projects. Earlier this week, I set up my plant lights as the first seedlings emerged from the soil a full week ahead of schedule. This weekend, I’ll start more seedlings and likely begin transplanting some of the things that are already up into bigger quarters.

The farmer’s garden

Both my grandfathers were farmers and my father grew up on his father’s farm. He worked not only on his father’s land but on the neighboring spreads as well. He turned the soil, hoed out the weeds, bailed the hay, milked the cows and tended the chickens. But we didn’t have a garden until I was ten–and then, I think, only because my mother wanted one.

It’s snowing again in southern New England.

My mother’s first garden was a small thing–a 12 foot circle of dirt just outside the kitchen door between the house and the driveway. She grew tomatoes there, and very little else with much success. Radishes, I think, and gnarled carrots that were stunted and twisted by the clay and rock of New England soil. It was a good place to dig for worms.

Lessons from the garden

Farming is in my blood but I didn’t have my own first garden until the year after I graduated from college. I was living with friends in a house that had a small yard with some raised beds and some leggy, unkempt roses nestled against the foundation. It wasn’t much, but it gave me some pleasure. I like to see things grow–and I don’t mind getting dirty in the process.

My mother’s first garden was a small thing…

I’ve learned a lot in my gardens–sometimes even about plants. I was impatient and short-tempered in my youth, but hiking up long trails with a heavy pack taught me that I needed to learn patience and my gardens were the place I learned to be that. You can’t rush the growth of a plant, nor can you slow it down once it decides to start growing.

Garden realities

And you can’t count on plants any more than you can count on people sometimes. You can do everything right with a pepper plant, but that doesn’t mean you’ll get a bumper crop of peppers. Nor does it mean the Habanero peppers you grow this year will have the same heat as the ones you grew last year. In the garden, as in life, nothing is entirely predictable. You can only do the best you know how and adapt when you have to.

You can’t rush the growth of a plant…

People laugh when I tell them it takes three years or more to get a garden truly doing it’s best. It takes two years just to get most of the rocks out of the soil here in New England. It takes three years to build the soil into something better than dirt. It takes manure and compost and careful attention to soil composition and acidity to really get things cooking.

The impatient gardener

But people want things right away. They throw chemical fertilizers and herbicides and pesticides at their plants without paying attention to anything but their own need for a quick fix and a quick success. In the process they often make the longterm results worse. Kill off the bees and the earthworms with pesticides and herbicides and destroy the tilth of the soil by relying too much on chemical fertilizers at the expense of organic matter and your yields will decline markedly over time.

…nothing is entirely predictable.

The lessons I learn in the garden I try to apply to every aspect of my life. As a teacher, I quickly learned that every student was as different as every tomato plant. Each one had to be treated as an individual. I learned I had to be just as patient with people as I did with the plants in the garden.

Moving quickly, moving smartly

I’m learning those lessons all over again as I work on Walking with Jane and NET cancer. My initial goals were shaped by my anger and frustration and impatience. NET cancer is a disease and my gardening instinct is to move quickly when I see a plant–or a person–in trouble. In terms of finding a cure, we need to do that quickly.

But people want things right away.

But organizations are made up of people–and while it is all right to be impatient about finding a cure, being impatient with people does about as much good as tugging on a plant to try to get it to grow faster: about all you accomplish by doing that is to pull a useful plant out of the ground. Everyone is doing the best they can with the tools they have to work with. You can’t cultivate people by throwing fertilizer at them; nor can you ask someone who is an apple tree to grow a turnip.

The patient gardener

And the same thing applies to me. Four years ago this month the idea of Walking with Jane began to coalesce out of conversations with a number of friends and colleagues. It would be another 14 months before we were ready to create Walking with Jane as a non-profit with a clear vision of where we wanted to go and what we wanted to do. And that vision has continued to evolve.

You can’t cultivate people by throwing fertilizer at them…

I used to tell young teachers–and still tell young gardeners–that it takes three to five years to become good at something you do. It takes five to seven years to really master a new skill or fully develop a new idea. By that measure, I am only mid-way to really knowing what it is I am doing.

The master gardener

People like to say that if you’ve been dealing with NET cancer for six months you have the equivalent of a Ph.d in the subject. But that is more a measure of how little we really know about the disease than it is a real understanding of the disease and how it works. The idea may make us feel good–make us feel like experts, but we aren’t. We only become experts when we recognize we have more questions than answers–and that even the answers we have are not very good ones.

…the same thing applies to me.

In the garden or the classroom, I may be an expert at that level. But in the worlds of NET cancer and non-profits, I’m not even sure I’m qualified to scatter a few seeds on the ground in the hope something useful comes up.

It's snowing again in southern New England but my thoughts have turned to my garden rather than winter. I've started my first plants for this year's projects.
It’s snowing again in southern New England but my thoughts have turned to my garden rather than winter. I’ve started my first plants for this year’s projects.

WWJ goals 2015–Part 4: Still more money

Fundraising, Goals, Marketing NETs

Money in my mouth

I had my fourth oral surgery in the last ten months on Tuesday. This one put in the post for the permanent implant that will replace the tooth that started this entire bit of lunacy last March. By the end of September, they tell me, this odyssey will be over. Frankly, I can’t wait. I am tired of being tired, tired of not being able to focus entirely on the things that need doing, and tired of not being able to spend the money I want to spend on fighting NET cancer.

…we can better support each other’s efforts.

Carcinoid/NETs patients face that exhaustion all the time. The difference is there is no real end to what they feel. The issues with my mouth are entirely curable. NET cancer is not–at least not yet. The work we do here is aimed at helping to change that. I wish I were better able to do that.

Support for immunotherapy initiatives

I’ve already written about our awareness goals for this year and the goals for our Marathon Walk team. Those are not, however, the only NET cancer goals we have for the year ahead. While the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute is the focus of much of what we do to support research, there are others engaged in important research as well that we want to increase our support to.

Carcinoid/NETs patients face that exhaustion all the time.

As we noted in last week’s Walking with Jane Carcinoid/NETs News podcast, the Caring for Carcinoid Foundation has launched a three-pronged immunotherapy initiative that will involve funding one drug trial and two pieces of research. I want to do everything we can to help with all three pieces of that initiative. I have seen the results of immunotherapy on other forms of cancer and am entirely impressed with what I can only describe as seemingly miraculous outcomes.

Supporting CFCF and CCF

One part of that support is a series of articles I am working on about immunotherapy, how it works and what the results have been with other cancers. I hope those pieces will encourage people to donate to Caring for Carcinoid’s efforts. Certainly, whatever money I personally can afford to send their way will head in that direction. And I will offer whatever other resources I can to that cause–including letter-writing and helping with other fundraisers they put together.

I want to do everything we can to help…

The Carcinoid Cancer Foundation is another organization I want to find more ways to help. Their work on raising awareness, especially about the AdVince and Seneca Valley viruses, but also in more general terms, needs to have greater support. We can have all the cures in the world, but if doctors and lay people don’t know this cancer exists–and know to consider it–those cures will not get to the people who need them.

Supporting and encouraging the grassroots

Equally important are all the smaller foundations working with regional NET cancer centers in the way we do with the program at Dana-Farber. National and global organizations are important, but so are more local operations aimed at supporting more local efforts. Reports last year that at least one NET cancer program was having to consider down-sizing because of money issues make my blood run cold. We need to help every NET cancer center get the funding it needs to keep doing the research and treating patients.

We can have all the cures in the world…

Ideally, I would like to see every National Cancer Institute Cancer Center have a fully funded NET cancer program. Patients should not have to travel 500 miles or more to find a fully qualified interdisciplinary team. That is too often the case. But when we do not have enough experienced doctors and we do not have the ability to fund that many centers, we have to make do with what we have–at least for now. Making sure that the centers we do have get the funding they need to do what they need to do is the necessary first step to getting the second part of that equation solved.

Forming a new alliance

To that end, I’ve already recruited people at the Boston Marathon Jimmy Fund Walk to talk with groups or individuals who want to set up something similar in their area. And I am certainly willing to talk to anyone at any time about how we have done what we have done within the Jimmy Fund Walk to aid DFCI’s program.

Patients should not have to travel 500 miles or more…

Further, I am willing to talk to anyone about how we set up Walking with Jane and any of the things we do. We all need to help each other race money and raise awareness in any way that we can. To that end, I propose we create a Carcinoid/NETs alliance aimed at bringing all of the organizations raising money and awareness for this disease so that we can all learn from each other and share ideas. And rather than gathering for a conference, I suggest we use Skype, Facebook,  and other social media for our interactions. That way, we can “meet” with greater frequency and provide each other with greater support.

Developing a role

I in no way intend for this idea to replace the NET Alliance or NET Cancer Day. Those groups have their own work to do. But I see a need for more grassroots level communication and support than we have now. Those of us at the lower and more regional end of the spectrum need to communicate better with each other about what we are trying to do and how we can better support each other’s efforts.

…provide each other with greater support.

Last fall, I published long series of articles about marketing NET cancer. These first four pieces on our goals for 2014 are part of the plan for how we implement the ideas put forward in those articles. In the final parts of this series, we’ll look at our goals for our Relay for Life team and some of the paperwork involved in making Walking with Jane fully functional that still needs to be done.

We need to keep moving forward on the money front when it comes to NET cancer. Whether we are walking, working at yard sales and dinners, or writing letters to potential donors, we cannot stop working until NET cancer is done.
We need to keep moving forward on the money front when it comes to NET cancer. Whether we are walking, working at yard sales and dinners, or writing letters to potential donors, we cannot stop working until NET cancer is done.

 

WWJ goals 2015–Part 3: More money

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

Raising money

The hardest part of this job is asking people for money. I am not very good at it and am embarrassed by the need to do it every time. The second hardest thing I do is ask others to help with raising money. I know most people hate doing it. It makes me feel like a panhandler every time I ask people for money–and like Fagan every time I ask others to do so.

…we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel.

As I said in my last post, though, killing carcinoid/NETs requires we find large amounts of money–and that we find it every year. Further, what we have raised so far comes nowhere near the amount we really need to make a cure a reality in the relatively near term. There are people dying of this disease every day out there. I really want that to stop.

Boosting our Jimmy Fund Walk performance

Last year, our Jimmy Fund Walk team fielded a team of 48 walkers who raised a combined total of nearly $70,000. As good as that was, we need to do better. As I write this, the goal listed on our site for 2015 is $80,000. It is a safe number, I think. I set it in November before I had a series of meeting with members of the Walk staff and people at the Program for Neuroendocrine and Carcinoid Tumors. Now, what I really hope we can do this year, is break $100,000.

…killing carcinoid/NETs requires we find large amounts of money…

Over the next few months I will meet with members of two of the higher performing teams in the Walk and in the Pan-Mass Challenge. I intend to pick their brains about how they have done what they have done and try to apply those lessons to our own team.

Helping team members reach their goals

My hope is we will also do a better job of supporting the fundraising efforts of our team members. I have more than a little experience, at this point, in marketing events. It’s time I shared that knowledge more broadly in support of events run by other team members. If I’ve learned one thing over the past four years, it is that I cannot do everything all the time.

…what I really hope we can do this year, is break $100,000.

Jenaleigh Landers, one of our team captains,  got help from some of her late father’s friends last year who wanted to put on a golf tournament in his memory. The Hank Landers Memorial Golf Tournament in northeastern Massachusetts raised about $6000 last year. And it has significant growth potential, given what Jena and her friends learned from last year’s efforts. Their success has inspired me to consider trying two new events–a golf tournament and a mini golf tournament–in the Greater Fall River-New Bedford area this summer.

Backing creative ideas

But we also need to help people use their own creativity. One of our team members last year raised a considerable amount of money through the sale of small zebra themed sculptures made from polymer clay. She also made stitch markers for knitting projects and a range of other items. In total, between those efforts and others, she raised nearly $7000 for the cause.

Their success has inspired me…

My letter-writing efforts have generated as much as $6000 a year. Each year, I offer that letter to others on the team to use with people on their Christmas card lists. Very few people use it. But if only ten people did so, the results for their fundraising efforts–and for our team–could be significant.

What is your special talent?

Each year, I also seek sponsors for our team t-shirts. I tell team members the prices and provide a letter for businesses they may know. I routinely raise $1000 myself from that effort. But there is room on the shirt for another $1200-$1800 worth of sponsorships.

…we also need to help people use their own creativity.

Every person has a talent of some kind that could produce a significant sum of money for our Walk team efforts. We need to help people do that. Some of those things require more effort than others. I’ve heard people on other teams talk about yard sales, product parties, and softball tournaments. It is all a question of what people are willing to take on.

Starting with easy

My advantage is that I am retired and have more time than many others do to undertake larger and more complex projects. But my experience is that often the easiest projects raise more money than the more complex ones do.

…I also seek sponsors for our team t-shirts.

A dinner, for example, requires lots of people and lots of effort spread out over weeks. My letter-writing campaign, which goes out to 400+ recipients, takes a couple of afternoons once the letter is written–and a couple of hours if I have help stuffing the envelopes. The dinner might gross $2000 and net about half that. The letters generally gross $3000 and net about $2400 once the stamps and envelopes are paid for.

Recruiting more Walkers

The first task in reaching that $100,000 Boston Marathon Jimmy Fund Walk goal is simply to help those already committed to the team to raise more money. The second task is to recruit more walkers. My goal is to build the team to 80 this year. That is a more complicated task.

…often the easiest projects raise more money…

But we will have more support from both the Walk team and the Program in Neuroendocrine and Carcinoid Tumors than we did a year ago–not that we didn’t have their support before. For example, the Program has just launched a newsletter for NET cancer patients at the Dana-Farber Cancer Institute. Our NETwalkers Alliance team and its activities will get regular coverage in that publication. It will not do any active recruiting for the team–there are ethical issues involved in that–but just the knowledge that a team exists should bring more people to our door.

Building momentum

We will also try to encourage people on both the clinical and research staffs to become more involved with the team. We will try to set up tours of the DFCI facility and labs for team members and perspective team members through the efforts of the Jimmy Fund Walk team. And we will get local media involved wherever we have team members through interviews and press releases. In addition, we have launched a NETwalkers Alliance Facebook page where both team members and the general public will be able to learn about our efforts.

My goal is to build the team to 80 this year.

Finally, this week, we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel. That program will have regular updates on NETwalkers Alliance team activities to support everything we are doing, in addition to providing news about NET cancer research going on at DFCI and elsewhere, as well as what other groups are doing to raise money for NET cancer research.

(Editor’s Note: While the Boston Marathon Jimmy Fund Walk is one of our major initiatives in our efforts to raise money for research into NET cancer in the coming year, it is not the only effort we have made a commitment to, even at Dana-Farber. In the next part of this series on goals and planning for 2015, we’ll look at the other NET cancer specific money efforts on our agenda.) 

We have walk team members starting from every point on the Boston Marathon Jimmy Fund Walk route. Our Walkers include caregivers, patients and researchers. We all want to find the money that will help fund a cure for NET cancer in all its forms.
We have team members starting from every point on the Boston Marathon Jimmy Fund Walk route. Our Walkers include caregivers, patients, friends and researchers. We all want to find the money that will help fund a cure for NET cancer in all its forms.

WWJ goals for 2015 Part 2: Money

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

Why money matters

Walking with Jane does not do medical or scientific research. We try to help create the funds that make research possible. Research requires four things, three of which cost oodles of money. The fourth doesn’t cost money directly, but money spent wisely on the other three can help create the fourth.

She wanted me to have an enjoyable retirement.

Every piece of research starts with a question or an idea. We have hundreds, perhaps thousands, of good questions and ideas about cancer, how it works, and how to cure it. Unfortunately, we only have enough material resources to fund less than five percent of those good ideas. The government won’t fund an idea unless the bureaucrats are fairly certain the idea will work or that the question will lead directly to a cure. Pharmaceutical companies will only fund trials when they are fairly certain the drug will work and that they will be able to turn a profit on it when it does.

The price of counting beans

Once-upon-a-time–when I was very young–American companies took a long view of success. Bell Labs sponsored huge amounts of research purely out of curiosity. Other companies did the same. They believed you could never be sure what new set of questions or ideas might lead to the next telephone or incandescent light. The graphical user interface (GUI) that we all use every day on our computers originated in the Xerox research lab. Then the bean-counters arrived and insisted companies worry more about next quarter’s profits than longterm success.

Every piece of research starts with a question or an idea.

Once-upon-a-time–when I was very young–the federal government was willing to fund basic research–research into things we didn’t have a clue where they would lead or if they would prove useful. We created nuclear power and sent people to the moon. Then the bean-counters took over.

Why what we raise matters

Today, real fundamental research funding comes from private charitable donors more than from anywhere else. I know I lack the knowledge necessary to decide what research money should be spent on. Places like the Dana-Farber Cancer Institute, the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation, among others, have people with good ideas that need to be funded. They have committees with expertise I certainly don’t pretend to have that review proposals and figure out what ideas make sense to look at and which ones don’t.

Then the bean-counters arrived…

Our job is to create the resources that will allow those groups to fund as many researchers and research ideas as possible. We help provide the people, the space and the equipment and supplies that are necessary to answer those fundamental questions that will lead to a cure for NET cancer.

A personal investment

Over the last four years, I’ve donated a substantial amount of my income to the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute through the Walking with Jane Dybowski Fund.  In addition, I’ve personally contributed another significant amount to that fund through my own donations to my Marathon Walk.

Our job is to create the resources…

I’ve also donated another chunk of my income to the Caring for Carcinoid Foundation and to the Carcinoid Cancer Foundation. We won’t discuss the comparatively small amounts I spend on things like the rent for this website nor the hours I spend writing for it and trying to keep up with the research and maintenance.

Paying the price

I am not a wealthy man. I am a retired school teacher. I live frugally: I make most of my meals from scratch at home; I bake my own bread; clean my own house; do my own laundry; keep the thermostat set at no higher than 68 degrees; grow my own vegetables eight months out of the year; clip coupons and watch for sales.

I’ve donated a substantial amount of my income…

I don’t say theses things to brag or to earn your sympathy. I say them to demonstrate how seriously I take the battle against carcinoid/NETs. Eventually, I know I am going to miss the money I have invested in this. I know the good health I enjoy today will likely be gone by the time we find a cure and I can relax and enjoy my retirement. But none of that matters to me. NET cancer took my beloved from me. I will do all I can to keep it from stealing the lives–and futures–of anyone else.

The cost of a cure

But I also know that what I have personally done the last four years financially is a drop in the ocean compared with what we need to truly come up with a way to kill carcinoid/NETs–to remove it permanently from Death’s quiver. It would be so easy to simply write the checks once a year and move on if I did not know how expensive finding the answers to this cancer are likely to prove to be. Jane’s final days haunt both my dreams and my waking hours. But the face isn’t always Jane’s that I see. Rather, it can be the face of any of the NET cancer patients I have met these last four years.

I am a retired school teacher.

Teams I’ve captained the last four years have raised $110,000+ for NET cancer research and another $20,000 for general cancer research and patient support for the American Cancer Society. That’s about what I made my last two years of teaching–total. So one part of me thinks that’s a huge pile of money. But the conservative estimate for what a NET cancer cure will cost to find is $100,000,000. In those terms, we’ve done nothing.

The cost of doing nothing

About 15,000 people will learn this year that they have NET cancer. For many, it will be the end of a years’ long search to find out what ails them. Between 3000 and 5000 will learn they have it because of the advances in diagnostics made over the last four years. All will potentially have the opportunity to use drugs and other treatments we did not have four years ago. But none of those treatments will offer them a cure.

…one part of me thinks that’s a huge pile of money.

About 12,000 people will die of NET cancer they know they have this year. Their deaths will look very much like Jane’s death. Their spouses will suffer the same things I have suffered. Over time, the number of people dying who know they have NET cancer will increase as we get better at recognizing what the disease is. If we do nothing, only that will change. Without a cure, 33 deaths a day will become 40 deaths a day in a very few years.

Why this matters to me

I started this piece planning to talk about our plans to raise money for research and awareness in 2015. But then I realized I needed to provide some background about why raising money matters–and where the money we raise goes–before I started telling people about what we hope to do and how people can help us do it.

About 12,000 people will die of NET cancer they know they have this year.

Jane told me before she went into the hospital what she wanted me to do if she died. She told me not to mourn–or if I did, not to do so for long. She wanted me to move on with my life. She wanted me to forget about her cancer. She wanted me to have an enjoyable retirement. I’ve disobeyed her on every count except putting up the Christmas tree every year. It turns out I can’t move on until the kind of cancer she had is no longer a threat to anyone. Together, we can all make that happen.

(This is the second part of a series on Walking with Jane’s goals and plans for 2015. In the next part, we’ll discuss how much money we will try to raise and how we will raise it.)

We walk to fund the research that will let us reliably detect and reliably cure NET cancer in all its forms. You can join our NETwalkers Alliance team or make a donation here.
We walk to fund the research that will let us reliably detect and reliably cure NET cancer in all its forms. You can join our NETwalkers Alliance team or make a donation here.

  

 

WWJ goals for 2015 Part 1: Awareness

Goals, Marketing NETs, NET Cancer Awareness Day/Month, ,

The zebra’s tale

I had a very different plan in mind when I got up yesterday morning. But that was before several sources reported the possibility that ESPN’s Stuart Scott’s cancer was carcinoid/NETs. My response to that was to shelve the piece on goals for Walking with Jane in 2015 I was working on and pursue the more timely story that seemed to be evolving. For a time, it appeared reporting on Scott’s cancer was following the all-to-familiar pattern we experienced after Steve Job’s death.

…hard work is the road to longterm success…

By the end of the day, it seemed likely those early reports were incorrect. Rather, it now appears Scott had a form of cancer even more rare than NETs. If NET cancer is a zebra, the best explanation of the cancer Scott appears to have had is that it is a polka-dotted unicorn. Given what I know of doctors’ responses to NET cancer, I can hardly imagine how difficult Scott’s interaction with his doctors may have been, right up to the moment of his emergency surgery in 2007.

Job one: raising awareness

The entire experience underlined for me how important it is that we raise awareness for all the zebra diseases out there. Last year, thanks to the ice bucket challenge, Lou Gehrig’s Disease landed on the map with a bigger splash than even when he made his announcement that he had ALS. If nothing else, people have now heard that name–and one hopes many more know the symptoms of the disease than did so a year ago.

…a polka-dotted unicorn.

Every rare disease needs dedicated advocates working to raise awareness of the disease among both medical personnel and lay people. We need to find ways to get primary care doctors to take the possibility that a patient may have a zebra more seriously than many do. Almost daily, I encounter patients whose doctors poo-poo the idea that they may be looking at a case of NET cancer. They sometimes refuse to test for it, even in the face of considerable evidence that it may be the culprit in a patient’s suffering.

The doctors’ problems

I don’t blame them for their ignorance or their actions. Primary care doctors face an overwhelming task. There are tens of thousands of diseases with hundreds of thousands of symptoms, many of which overlap with several different diseases. No human being can truly be a master of every disease. Specialists have it easy by comparison.

Every rare disease needs dedicated advocates…

But even specialists face significant problems. There are thousands of types of cancer. They can become expert in a handful and have significant knowledge about a number more. But we become most expert at what we most often deal with. If you see one case of NET cancer over the course of a career, it is unrealistic to think you are going to spend the time becoming an expert in it. You know lung cancer, breast cancer, prostate cancer, colon cancer, and pancreatic cancer well because you see them most often.

Building on the past

Last year, with Jennifer Chan and Matt Kulke, I did two shows on NET cancer on Doctor Radio on Sirius XM. We hoped to reach doctors and patients with more knowledge about the disease and its treatment. My hope is that we will return to that program again this year.

There are tens of thousands of diseases…

Radio could give us the ability to reach more folks than we do now. I know many of you have contacts in that world. Some of you have even made appearances on radio broadcasts to talk about NET cancer. I want to encourage regional foundations to exploit those contacts. We have several doctors who have expressed a willingness to do things similar to what we have done with Doctor Radio. And I am willing to do as many radio appearances as people want me to do.

Audio and video podcasts

But we need to do more. Starting this month–I hope this week–Walking with Jane will launch a 5-10 minute audio podcast once a week on our YouTube Channel. That podcast will touch briefly on the latest research on NET cancer and events scheduled by the various NET cancer foundations and patient groups. The program will not pretend to be more than a headline service, though we will find a way to provide links to more in-depth coverage of those stories we cover.

Radio could give us the ability to reach more folks… 

In addition, we will launch a regular video podcast once a month that will include a five-minute news summary similar to the audio podcast, as well as more detailed interviews with doctors, researchers, foundations and patients. We hope the video podcast will air once a month and run 20 minutes or so.

Expanding offerings on walkingwithjane.org

Much of what I write here has an editorial flavor to it. My hope is to provide more hard news in this space about NET cancer in the coming year. I also need to recruit patients and caregivers to help provide more of the content here. If you are a patient interested in sharing your experiences with your treatment here on a regular basis, I need to hear from you. If you are a caregiver–professional or layperson–I’d like to provide space for those stories here as well–and I want to hear from you, as well.

The program will not pretend to be more than a headline service…

I have come to the realization that I am trying to do way too much on my own–especially as I try to expand what we are doing and offering. Writing for this website is one of the things you can do to help.

Telling Jane’s story in new venues

Help on that score will free me up to undertake a new task. I have begun scheduling speaking engagements for the coming year. I am not pretending to be a medical expert in these speeches. I am telling Jane’s story and relating my personal experiences as a caregiver. It is a form of outreach I have been uncomfortable doing to this point. It is only in the last few months that I have been able to talk about what happened with Jane in public without breaking down.

Writing for this website is one of the things you can do to help.

But sharing her story is something that needs to be done. And I won’t just be doing it with public speaking. In December, I began composing The Widower’s Tale, the story of what Jane and I went through with her disease–and what I have gone through since her death. Eventually, my plan is to publish that story as a book. The proceeds from that will go to NET cancer research and to support an online grief group that has helped–and continues to help–me get through the grief process–and needs the money to keep doing their good work.

Giving people what they need

Last year, this website had nearly 17,000 visits. The goal for next year is to increase that number by 7,000. Every person who visits this site arrives looking for information to help them deal with their NET cancer or the NET cancer of someone they love and care for. Our job is to provide both information and moral and emotional support for them when they need it.

…sharing her story is something that needs to be done.

Last year, we nearly doubled the number of people coming here in our best previous year–and nearly tripled the number of visits made in 2013. There is no magic in that improvement. We are giving people what they need when they need it. But we need to do a better job and I will need your help to do that.

Building success

I am not suggesting anything fancy here. While I would be delighted with an ice bucket challenge event of our own, I know lightning rarely strikes in the same place–or in the same way–twice. We cannot sit back and wait for a lucky break–though we do need to be prepared to take advantage of it if it occurs.

We are giving people what they need…

My experience tells me that hard work is the road to longterm success in any endeavor. There is nothing glamorous about it. It amounts to getting up every morning and doing the work that needs to be done. I hope some of you will come help me do some of the lifting and toting that needs to be done this year.

Editor’s note: This is Part 1 of a series on our goals and plans to reach those goals in 2015. Part 2 will talk about financial goals.

One of our goals is to help people navigate the obstacle course that is NET cancer by providing them with timely support, not only through factual information about the disease but about how others are dealing with their own experiences.
One of our goals is to help people navigate the obstacle course that is NET cancer by providing them with timely support, not only through factual information about the disease but also about how others are dealing with their own experiences.