Spreading the word

I just got back from Baltimore yesterday. What was in Baltimore? The National Dialogue for Action conference. Dialogue for Action is a project of the Cancer Research and Prevention Foundation (CRPF) which is a fantastic organization devoted to research into early detection and prevention of all cancer, not just colorectal. But since colorectal cancer is preventable, they give it a lot of attention. Dialogue for Action is a special conference operating under the theory that if you put a lot of great minds together across multiple disciplines, great things happen.

I’ve been to quite a few meetings/conferences on this subject and they’re all very similar…arrive at a hotel conference room, get your folder and hanging name badge, mingle, sit in rows and watch a panel of well-dressed PowerPoint presentations talk about whatever the subject is, people line up at microphones in the aisles to ask questions and that’s it. Maybe a rubber chicken dinner or something. Of course, there’s learning otherwise they wouldn’t keep doing these things. But the real power of attending these meetings is about what happens in the hallway. The mingling, the networking, the exchanging of ideas. At the Dialogue for Action conference, that time is built into the agenda. There’s the talk-at portion with the panel, but there’s also real dialogue around a given subject. Chairs are set in a circle and the group must come out with solutions. The groups are advocacy group reps like me, patients, doctors, med students, nurses, public health experts, cancer experts, writers, consultants, etc., etc. It’s very dynamic. My group focused on the issue of preventive screening to underserved and underinsured populations. It’s a big issue that’s been close to my heart since my experience with education advocacy. As I said in the meeting, the same barriers that prevent an uninsured, overworked (or underworked) minority from getting involved in their children’s education also prevents them going to the doctor or clinic. This is a preventive screening test that costs $1,500–2,000, requires expert delivery, time off and it’s icky. Yes, my colleague actually got leading physicians and oncologists to use the word “icky” in casual conversation. That’s the power of a meeting like this.

CRPF is also doing these dialogues on a state-wide level. I am on the planning committee for the New Jersey Dialogue for Action.

Because I was away, I didn’t get time to blog about the Today Show. This past week, each morning at around 8:15 am the show did a segment on a different issue around colon cancer.  On Wednesday, they talked about getting support online. The feature was about Suzanne Lindley, who is a 7.5–year Stage IV survivor. Suzanne is the buddy list coordinator for a patient support-focused organization that I was a founding member of. When she was first diagnosed, she became very good friends with my father and considers him her first “buddy.” I spoke to her a couple of weeks ago, and she told me that she told the producers about my father during the taped interview. There was a chance that his name and picture would have been shown on the show. Alas, they reduce 7 hours of filming down to 5 minutes and it didn’t happen. But I did see exactly the point in the interview that my dad was probably her next sentence after they cut and I know he heard it, too. After the taped segment, Suzanne appeared on the show live with Katie Couric. She looked great and did a wonderful job. I know my dad was proud of her. Katie Couric personally invited her to the big gala NCCRA held that night.

Friday, one of our advocates, Robb Kerr was featured in a segment about clinical trials. NBC called us late last week asking if we knew of a patient who went through a clinical trial and was doing “okay.” Robb was the first person who came to mind. He’s featured on our website (it’s his picture under “Find Trials”). He’s currently in his 5th trial since being diagnosed in 2002. Robb may be familiar to NAPP members (National Association of Photoshop Professionals). He was one of their first educators, traveling around the country doing their trainings. He told us that in his interview he spent time talking about C3, but once again editing killed us. Robb was great, though. We’re barely a year old and we’re getting called by major media. Next year, maybe we’ll actually get mentioned on the air.

In the meantime, NCCRA partners with other organizations to present the Legislative Report Card. This national report card measures legislation in each state to require insurance companies to cover colorectal cancer screening. This year, we were a collaborating organization on the report. Our Action Center allows folks to easily send a message to the health committees in their state, asking for consideration of this legislation. In the past few days our action center has sent out over 400 emails.

If you’re interested, here’s the March 2006 enewsletter we sent out earlier in the week (when there was still a chance we’d be mentioned on the Today Show).

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