Looking at accomplishments

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

We’ve done a lot to raise awareness…

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

Accomplishment 1: Walking with Jane

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

…I have to be realistic…

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

Weighing priorities

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

…I don’t always play nicely with others…

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

Building on the accomplishment

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

…I seriously thought about closing up this shop…

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

Accomplishment 2: Building an image

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

…we could do with more help…

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

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

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

Accomplishment 3: The pamphlets

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

…the most powerful logo they have ever seen. 

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

Accomplishment 4: Social media

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

…I had drafted our first pamphlet…

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

Accomplishment 5: walkingwithjane.org

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

…we needed a social media strategy.

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

Failure and success in November

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

The website was far from an instant success.

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

Accomplishment 7: PSAs and videos

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

…we have repeated that effort each year…

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

Accomplishment 8: Local media presence

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

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

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

We’re ready for the next move

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

The upshot is fairly frequent local coverage…

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

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