The other event that happened September 2

Another important event happened on Tuesday that got lost amid all the agony of our Silver Wedding Anniversary. Walkingwithjane.org celebrated its third birthday September 2. When I settled on that as a launch date I think sometimes I made a serious error in judgement. It was the first wedding anniversary I observed without Jane and I wanted something positive to keep me occupied.

Change begins with each one of us individually.

For that first anniversary, it served that purpose. It distracted me–in a small way–from the horror of that day. But in the days leading up to this September 2 I realized the website was not likely to get its proper attention. While it has not done everything I wanted it to do, it has been successful far beyond what I had any right to expect.

Event-filled first year

I didn’t know, as I wandered the wilderness that was 2011 for me, how much time and energy the whole concept of Walking with Jane was going to take. We’d launched our Relay for Life team in May of that year and quickly raised over $2500. I had set up my personal Marathon Walk page and joined the Caring for Carcinoid team in July. In the first night, I raised over $1000 of what would turn out to be a $4500 effort. That team raised over $35,000 total.

Walkingwithjane.org celebrated its third birthday September 2.

Whatever event or idea I touched seemed to flourish–and the website launch was just the latest in an ongoing series of successes. In our first 28 days, we had nearly 1600 views and over 800 visitors. By year’s end, we’d generated over 5000 hits. October, November and December, while not as strong as September, were all over 1000 views–and I expected 12,000 over the course of the first full calendar year was a realistic possibility.

Difficulties in the actual event

There were blemishes, though. The patient and research forums we set up as part of the initial package collected nothing but spam. I found that keeping up with the research was much more difficult and time-consuming than I expected. And I discovered that if I didn’t post something new virtually every day, the site visits tanked in a truly spectacular way.

Whatever event or idea I touched seemed to flourish…

Worse, no matter how much I studied search engine optimization protocols, we could only rarely get anything other than the name Walking with Jane on the first page of any search. What good was the website–what good was the information collected there–if no one could find any of it?

Event warred with event for attention

Worst of all, I’d over-committed on other fronts. I’d been asked to chair the local Relay for Life. I said yes–and agreed to do a lot of PR work for the event as well–not to mention captaining our Walking with Jane team on top of that. I was asked to captain a joint Walking with Jane/Caring for Carcinoid Marathon Walk team that would need to be rebuilt from the ground up after the chief organizer departed. I said yes–not realizing how devastating the loss of a good captain can be.

There were blemishes, though.

That fall, I also started the process of creating Walking with Jane, Inc., a non-profit foundation that would serve as an umbrella organization for all our cancer fighting efforts. Again, I didn’t know going in what a paper chase that effort would be, even with great legal help being donated to the cause.

Event after event on tap

I’m not very good at asking people for help–whether physical or fiscal. I’d bitten off a lot more projects than I could chew, even with an abundance of help. And I’ve never really learned that lesson. While I am no longer chairing Relay for Life, I’m likely to go back onto the planning committee this year. I learned a lot sitting in the bleachers this year as a captain–and it’s a perspective I need to bring back to the operation.

…I’d over-committed on other fronts.

I have a television news show on carcinoid/NETs I’ve been working on for the better part of a year I’d like to premiere this year; a desire to expand on the Fall River Half Marathon fundraising event Dan Hurley launched last year; setting a carcinoid/NETs alliance that this year’s Marathon Walk team is the first step to creating; and developing a real marketing plan that will get carcinoid/NETs in front of a much wider audience at every level.

In the event, I have more ideas than I can handle

Like the fight against carcinoid/NETs itself, I have more ideas than I have the resources to explore and carry out. But each of those ideas needs to be explored–and most of them need to move forward.

I’m not very good at asking people for help…

So I’m looking for partners. If you’ve lost someone to this foul disease and you are looking for something to do to fight back; if you have the disease but are in a position where carcinoid has not left you with no energy beyond that your body needs to keep moving; if you are a researcher or a doctor with even a few hours a month to do something outside the office or outside the lab–we need you.

We need an event that will change the math

Someone suggested in a private patient support group today that we need to raise about $100 per known patient to really make a difference in the fight against this disease. He estimates we are only really spending about $7 million on research on it–about $50 per patient. And if we take out what pharmaceutical companies are putting in, it comes out to less than $15 a patient. We need to do better than we are.

…I’m looking for partners.

That was true three years ago when this website started. It remains true today. Change begins with each one of us individually. But when we all pull together, we can accomplish great things. Let’s make killing this disease our next great thing.

By the way: after interest collapsing to the point I was ready to close this site down last winter, we’ve already logged over 9,000 hits this year–and had our two biggest months ever.  Thanks for your help.