NET cancer and the fifth grade

My fifth grade teacher had a saying that is ingrained in my thinking: It is better to aim for the moon and clear the fence than to aim for the fence and crash into it. With NET cancer, that is a particularly apt phrase.

NET cancer kills.

We can bemoan the state of NET cancer funding and awareness–and the difficulty of changing either of those facts–or we can work to change the reality on the ground. From the beginning, that is what Walking with Jane has been about. I wrote my first piece on NET cancer and Irritable Bowel Syndrome less than a week after we buried Jane’s body. I wrote it because that inaccurate diagnosis 30 years before had stopped my wife from getting the treatment that might have saved her life.

Aiming high to kill NET cancer

I had little hope as I wrote that piece that anyone would read it. Two years later it is among the most viewed items on this website and is now available in pamphlet form. (Write us at walkingwithjane@gmail.com.)

…sometimes a zebra is really a horse wearing stripes.

In drafting our goals for this year I am fully aware of how high we are aiming. But for too many years the goals on NET cancer have been set on what we thought we could accomplish rather than on what we needed to accomplish. There are 120,000 people currently diagnosed with NET cancer who cannot afford to wait 25-30 years for a cure. They will be dead by then–and they will have suffered horribly getting there.

Killing NET cancer with money

Our first goal is financial. In keeping with my original goal of doubling spending on NET cancer every year for five years, next year Walking with Jane’s fundraising target is $150-200,000. The $150,000 figure is based on my original projection in 2011 of $37,500 for our first year, $75,000 in our second (2012) and $150,000 in our third. However, we have beaten the figures for the first two years–generating nearly $150,000 over that time; about $96,000 last year alone. Going with doubling every year for five years would give us a goal of $192,000 for 2013.

…a more substantial fundraising base for all of us working on NET cancer.

About a third of what we have raised the last two years has gone to general cancer research. My hope is that we will keep that ratio this year as well. We just never know where the next breakthrough will come from–and general cancer research is providing some important insights into NET cancer.

Expanding our NET cancer teams

In order to accomplish this goal we will need to increase the size and income of both our Walking with Jane Relay for Life team and our joint Caring for Carcinoid/Walking with Jane Jimmy Fund Marathon Walk team. But we will also need to increase the size and number of our fundraising projects. Last year we held a very successful pasta supper and an equally successful pair of yard sales, as well as a single mass mailing and corporate sponsorship program.

…we will revamp our current press kit…

But we need to expand into activities that will involve different audiences and different activities. We talked about setting up race teams last year, for example. We need to take some of the things we talked about a year ago and add them to the mix this year, while coming up with new ideas as well.

Killing NET cancer with knowledge

Raising awareness about NET cancer in both the medical community and the among the general public is our second goal this year. I have already written scripts for PSAs for television that are awaiting some action at CBS. But getting on a single network will not get us the largest possible audience. We will draft additional scripts for other television outlets, as well as for radio and the internet. And I will take whatever steps are necessary to get those scripts made and aired.

…increase the size and number of our fundraising projects.

In addition, we will revamp our current press kit from the current once a year splash to a once a month source for stories that can be used in newspapers and magazines across the country. We currently have in the works an FAQ by Dr. Jennifer Chan, a patient piece by Becky Martins–which will be posted within the next week–and a news piece on NET cancer funding at the Federal level by Meg Flanagan.

Expanding our NET cancer reach

We are also currently investigating a further expansion into social media–we already have a substantial presence on Facebook and Twitter, as well as a lesser presence on tumblr–and the possibility of a weekly Podcast.

Our first goal is financial.

Raising public awareness about NET cancer will not only save lives but may also help build a more substantial fundraising base for all of us working on NET cancer.

NET cancer for primary care doctors

Reaching the medical community will prove a more difficult task. Primary care doctors need to know more than the name of the disease and its symptoms.

I am fully aware of how high we are aiming.

To that end, we will continue to urge the Dana-Farber Cancer Institute to hold either a single conference for primary care physicians or a series of smaller presentations regionally over the next 12 months. We need to make more doctors aware that sometimes a zebra is really a horse wearing stripes.

NET cancer road for 2013

Meanwhile we will continue to upgrade this website and update it with the latest information on NET cancer available for doctors, patients and caregivers.

It is better to aim for the moon…

We will continue to need your help if we are to accomplish all of this in the year ahead. There are lots of ways you can contribute to our efforts to kill NET cancer–and most of them do not involve money.

NET cancer kills. We need to kill NET cancer.