Sometimes I feel like a motherless child,
Sometimes I feel like a motherless child,
Sometimes I feel like a motherless child,
Sometimes I feel so alone.
–Richie Havens
There are days I feel completely overwhelmed by all the things we need to do to make what we are trying to do here work. Every day I sit down and construct the list of what needs to be done. It starts with what did not get done the day before–and there are always some of those–and continues with the new things. Then I try to order things from what needs to be done immediately to what can wait if it has to.
Then I start powering through the list that I never seem to get to the bottom of. Sometimes it seems like I get to the end of the day and I have accomplished nothing.
Then I look up and see how far we have come instead of the distance left to go. And even I am stunned by what has been done.
I last posted a report on where we were just about a month ago. That was posted on Facebook. This time I am posting it to our own website. That is one measure of how far we have come in that month. But it is only one measure.
This site launched 26 days ago at 11 p.m. The following day we had 156 views in 24 hours. That is still the most views in a single day, but the average per day has slowly increased every week since. Less than three weeks later we had our 1000th page view. By the middle of next week we should hit 2000–and it could happen by the weekend.
The site has given us abilities we did not have before. People can easily find information on neuroendocrine cancer and carcinoid syndrome without having to worry about where it has scrolled to on Facebook. We can update information much more rapidly and immediately let people know where they can find it. This daily news section means I can hit on particular issues–and people can easily find those posts weeks, even months–perhaps even years–later.
The site is not perfect. Nor is it finished yet. We need some pictures above and beyond the logo. We are still trying to get things set up so we can sell t-shirts and the like to people who want them. All the money raised through those sales will go straight into our Relay for Life account for 2012. I hope we will have that going by next week–by the end of October at the latest. We have some other plans in the works as well, including building a press kit to raise awareness of NEC and CS through easy to download stories newspapers and magazines will be able to download for free.
Phil Devitt and Becky Martins are chasing the content for those articles as I write this. We hope to have some sample stories ready for review by the middle of October that we can use to do outreach to papers outside southeastern Massachusetts. The package will include interviews with doctors, patients, researchers, the leadership of the various foundations and plenty of background on what NEC is and how it works.
We raised nearly $4400 through the Jimmy Fund Marathon Walk for research into NEC and CS. The Caring for Carcinoid team raised just under $34,000 including my contribution. If you still want to make a contribution, you have until December 31 to do so. I described the walk in an earlier post. Let’s just say everyone should walk that distance once. And I may even do it again myself. But I think I will have to train harder for next year.
Our Walking with Jane Relay for Life team has already raised $264 for next year’s event. The Atkinsons sold t-shirts, buttons and bottles during the massive yard sale in their neighborhood for the lion’s share of that.
Sometime in October we will bring the whole team in for a meeting to figure out our plans for the next eight months.
I have officially taken on the mantle of Greater Fall River Relay for Life chairperson. A small group of us will meet next week to scout locations for next year in case Somerset’s construction forces us to move the event. The full planning committee will meet Thursday, October 13, tentatively at the Fall River Police Department at 6:30 p.m. if you want to join the planning committee, try to attend that first meeting.
Last weekend I attended the New England Relay for Life Summit in Springfield. While the event was emotionally taxing–I am still too close to my own grief not to have a visceral response to others stories of grief–I learned a lot that will be useful in the months ahead.
The event also gave me the opportunity to meet, however briefly, with the New England Regional president of the American Cancer Society. We have since talked on the phone about funding for NEC and CS research. He has asked me to put what I told him in writing so he could pass it up the chain of command toward the level where decisions get made. He seemed receptive. I will write what he needs and see if we can’t get more support for research out of ACS.
Today I sent the mission statement and the financial plan to the lawyer–the next step in moving us to non-profit status.
So we’ve made some real progress in the last month. There are still lists and lists of things to do. There are still things left on today’s list I have not gotten to. But there are things on the list that did get done. And every item brings us another step closer to killing this disease.
Thanks to all of you for your work and support. Together we will get there.
