Tag Archives: goals

Goals for 2020 for WWJ

awareness, Fundraising, Goals,
The goal of a sea eagle is to raise a chick able to survive on its own. The goal of Walking with Jane is to help form a movement against NET cancer that will survive until we finally have the awareness, the diagnostic tools, and the cure we need to put NET cancer in the grave for good.
The goal of a sea eagle is to raise a chick able to survive on its own. The goal of Walking with Jane is to help form a movement against NET cancer that will survive until we finally have the awareness, the diagnostic tools, and the cure we need to put NET cancer in the grave for good.

Planning for success

I am, by nature and by training, a goal-setter and planner. As one of my early mentors said, “Those who fail to plan, plan to fail.” The result is that I am constantly aware of not only what I want to accomplish, but how I intend to reach those goals. I do this in both my personal and professional lives—though sometimes I have difficulty telling those two things apart.

Together, we will make a difference.

In January of each year, I spend several days reviewing where things stand in my life and sketching out what I want to do in the coming year to move closer to my long-term goals. Those plans rarely survive contact with reality. Life has a way of screwing up even the best conceived notions of what to do and how to get there. Jane’s death pretty much annihilated everything I originally had in mind for the last ten years. 

Setting goals

I rarely share my personal goals outside of a very small circle of friends. Jane was that circle 10 years ago. No one has seen more than the edges of those since she died. That’s unlikely to change very much in the immediate future. I am, where that is concerned, a very private person.

Those who fail to plan, plan to fail.

I have no such reservations, however, about sharing what I want Walking with Jane to do. This is a cooperative enterprise—or at least it is supposed to be. I may bear the bulk of the load, but others play a significant role in shaping where and how things happen here. Sometimes, they do so without knowing they are doing so. Other times, they play a more aware role. All of you need to know what I am thinking and where I’m going and why.

Looking at what is

Last year was emotionally difficult. We lost too many patients whose stories and struggles I knew too well. I have no words that will comfort grieving families or grieving spouses in any real way. The loss of a child, a husband, a wife, a parent at too young an age is an inconsolable thing. It underlines how badly we need better awareness among medical professionals and among the general public. It underlines how badly we need better diagnostics, better treatments—and how badly we need to find a cure.

This is a cooperative enterprise…

When we started Walking with Jane, there were too few support groups, too few reliable sources of information for patients written for patients. Today, those things are far easier to find. We had nothing to do with any of that—other people figured out what to do to make those things happen and work. I could see the need, but I couldn’t figure out how to get there. Today, I honestly don’t worry about those things beyond helping people find them.

Goals for raising awareness

But awareness outside of patient groups remains a substantial problem. Despite a myriad of efforts by a wide variety of groups, few primary care doctors or nurse practitioners have any knowledge of NET cancer. If we are to begin catching this disease early enough to make a real difference in the lives of patients, we need to change that. Today, we still only catch the disease in its early stages by accident.

Last year was emotionally difficult.

Nor, despite the fact NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer in the number of patients currently diagnosed with the disease—does the general public have any awareness of NET cancer.  If we are to raise the money to do the basic research that will lead to a cure for this disease, we need to change that.

Legislative goals

To those two ends, Walking with Jane will focus on developing three initiatives in the coming year. Greta Stifel, a NET cancer patient in CT, spent two years successfully crafting and lobbying for a law in her home state that now requires all primary care physicians and nurse practitioners do course work in rare diseases as part of their recertification process. I have promised her we will work with legislators in the rest of New England to pass Greta’s Law throughout the region. We will encourage those in other regions to do likewise, intending to push for federal legislation within the next five years. My thought is we need to learn how the legislative process works at the state level before we take on the federal government.

Today, we still only catch the disease in its early stages by accident.

I know of few patients who have exhibited more devotion to the cause of NET cancer than Greta. She deserves the honor of legislation named on her behalf. Let’s all work to make this happen.

Expanding on past goals

This action will, we hope, be one step in raising awareness among medical professionals. But we need to do more than that. In November, as part of NET Cancer Awareness Month, Walking with Jane launched the #30NETfactsin30days campaign. We reached out to over 500 medical and news organizations with a single fact each day about NET cancer.

Let’s all work to make this happen.

Some student nursing groups picked up the campaign, as did a small group of medical schools. We will attempt to build on that campaign in the coming months with similar campaigns focused on pancreatic NET, lung NET, pheochromocytoma and paraganglioma, intestinal NET, and High Grade neuroendocrine carcinoma. 

More awareness

These two efforts may help to raise awareness among people in the medical community, but we need to find other means of doing so, as well. We remain open to anyone who has materials they would like to share with all levels of medical practitioners. I can think of at least two recently constructed books I’d love to get directly into physician and NP hands.

Walking with Jane launched the #30NETfactsin30days campaign.

The third initiative is aimed at raising awareness among the general public. I’ve honestly no idea how to accomplish this. But I will spend considerable time talking to friends in marketing about how we create our own “ice-bucket-challenge” moment—and how we build on that moment.

Money goals

Money matters. It’s how we pay for the research we need that will lead to better diagnostic techniques and a cure in the long-term—and to a better quality of life for patients in the short-term. Walking with Jane will continue to work on a range of local fundraisers, including craft fair appearances, dinners, miniature and real golf tournaments, sponsorships, and letter-writing campaigns.

… we need to find other means of doing so…

We will continue to have and support teams for events like the Boston Marathon Jimmy Fund Walk and the Pan Mass Challenge. We will continue to advise any team for those or similar events elsewhere.

Expanding funding base

But we will also begin to publish here and elsewhere a series of articles on how to raise money through specific techniques. We already have in hand a piece on how to run a golf tournament, written by someone who has run one of the most successful charity tournaments for the Marathon Walk.

Money matters.

Other articles will include how to draft a fundraising letter, generate a mailing list, run a craft fair, put on a dinner, and put on a miniature golf tournament. Each will be written by someone who has successfully run that kind of event.

Shifting focus

These first five goals evidence a clear shift in Walking with Jane’s focus away from providing medical information and other patient support to raising awareness in the medical community and the general public while continuing grassroots support for helping to raise money for medical research. That shift will also be reflected in the thorough redesign of this website.

…articles on how to raise money through specific techniques.

We will continue to provide links to the best available information and support for patients and their families. However, we will rely on other sites run by other entities to carry the bulk of that load. We will provide links to those sites rather than trying to duplicate their efforts.

Building networks

Once upon a time it seemed there was a need for us to be all things to all people. If that time was something other than a figment of my imagination—and it likely was—that time has now most certainly passed. Increasingly, I see Walking with Jane as part of a network of organizations working on particular parts of the NET cancer problem.

…a clear shift in Walking with Jane’s focus…

One of my goals for this year—and into the future—is to help that network develop in every way that I can so that no one ever confronts the situation Jane and I did in the summer of 2010. 

Finishing goals

With one exception, our other goals for 2020 are pretty simple. First, as many of you know, I spent a part of last year building an office for Walking with Jane in the basement of my house. The organization had largely taken over my study—where it started—my guest room, my dining room, and my living room—and had begun to creep into my bedroom. While the construction is finally completed, I’m still unpacking the preceding seven years of paperwork.

…to help that network develop in every way…

Finishing that and getting the various pieces of paperwork done for the state and federal governments are my next priorities.

Looking beyond

Which brings me, at last, to my final goal for 2020: In 2021, for reasons I’ve detailed elsewhere, I’m taking a year off from most of what I do with Walking with Jane. To do that, I need to recruit some people to take on some of the work I do here. If you’d like to do some of that, I’m willing to train you. Just drop me a line at hp@walkingwithjane.org.

I’m still unpacking the preceding seven years of paperwork.

As always, we face lots of challenges in the year ahead. Together, we will make a difference. We will make life better for every NET cancer patient and their families and loved ones. We will keep working to find better diagnostics, better treatments and—ultimately—a cure. Together, we can do this.          

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.