Anniversaries approach

Our walkingwithjane.org website turns three on September 2, the same day Jane and I would have celebrated our 25th Anniversary. While that day will be difficult for me–more difficult than I can describe–for patients, caregivers and donors it will, I hope, be a positive day.

It is what I will continue to do until we have a cure.

You see, the website almost didn’t make it to its third birthday. After three terrible months where no one was bothering to even look at the site beyond about 10 people, I spent part of February seriously thinking about shuttering this piece of the effort to focus my energies on other pieces of the Walking with Jane puzzle that were making–as near as I could tell–more of a difference.

Remembering audience

But I went back and thought about audience and realized that somewhere along the way I’d lost sight of what our audience needed instead of what I needed. I decided to give it another three months with a different focus.

…the website almost didn’t make it…

I spent a lot of time that first month just thinking about what Jane and I needed to have when she was diagnosed, about what I heard in patient support groups, and I looked back at those posts that had done better than average in the past. I realized that people were asking for real, clear information about what was going on in research, but they also wanted the truth about what it is like to have this disease.

What potential donors need to hear

And the rest of the world needed to hear what the face of this disease really looks like. They needed to understand about the hideous diarrhea, the gas, the bloating, the flushing, the heart problems–all the awful things that patients and caregivers face–up to and including the death patients face–a death like no other I have ever seen.

…they also wanted the truth about what it is like…

Let’s face it, there are lots of things about this form of cancer neither patients nor caregivers have wanted to talk about publicly. But if we are not willing to talk about those things we will never get the public attention we have to have if we are ever going to raise the money to find a cure. Those graphic cigarette ads not only warn about the resulting lung cancer, they also create a human face for the disease that is hard to ignore.

Making a difference for patients

So I decided to take the gloves off and come out swinging. If it didn’t work–on multiple levels–I could always go back to the original plan of giving up the website and focussing on other projects.

…a human face for the disease that is hard to ignore.

While it has not been easy, the change has been remarkable. For five consecutive months we have not only topped the previous year’s month, we have topped the best that month has ever done–often by substantial margins. And the comments, both online and off, say we are finally making a difference in the lives of patients, caregivers, and donors.

Other social media fixes

Our Facebook and Twitter accounts have also received subtle revisions that have changed things as well. We’ve nearly doubled the likes on Facebook and more than doubled the number of followers on Twitter by getting back to the main mission: educating people about carcinoid/NETs. We’ve tried to stay short and to the point. And our Twitter outgoing feed focusses almost exclusively on carcinoid/NETs issues. Our Facebook views are up 500 percent from where they were in January.

…the change has been remarkable.

There are pieces of the online world I still do not understand very well–or at all. I know we need to be on Pinterest and Instagram and a couple of other things–but time is increasingly a problem as we become more and more involved in a variety of fundraisers, conferences, and other projects.

Finding time for closer mission focus

Last week, we signed off on the final federal non-profit paperwork. This week, I hope to finish the last of the state corporate paperwork.

…time is increasingly a problem…

With those two monsters done, I’ll be able to get back to what this project is really about: killing carcinoid/NETs so that no one ever goes through what Jane did–and that 12,000 patients a year do; so that the 120,000 patients currently knowingly living with the disease have hope that they will not follow those 12,000 into the grave after years of unrequited suffering; and so that the untold numbers of patients who search for an answer to their undiagnosed physical ills get the answers they need and deserve.

Making a difference in people’s lives

That’s what I set out to do here in the beginning. It is what I will continue to do until we have a cure.

…I’ll be able to get back to what this project is really about…

I hope what we do here–and elsewhere–will make a real difference in your life–whether you are a patient, a caregiver, a researcher, a donor, or an interested friend.