Work stuff

One of my primary responsibilities for [C3]( is the website. Keeping it up-to-date and growing it. I’m happy to say that has been going well. The up-to-date part has been easy thanks to the two blogs that I added.

One is our [news blog]( by Kate Murphy. Kate is a 22 year cancer survivor and well-regarded in colorectal cancer research and patient advocacy circles. She was already keeping a blog on Blogspot, we just had her continue what she was already doing but do it under our roof. I’m very pleased with the results. Case in point: On Thursday, November 3 Amgen released a report that one of their drugs, Panitumumab, improves progression-free survival in metastatic colorectal cancer. Kate [reported this]( on the blog immediately. We walk a fine line with news coming out of the pharmaceutical industry. A press release in itself is not news. But if the information helps people with colorectal cancer learn of treatments that may save or prolong their lives, you bet we’re going to talk about it. This morning, a Google search of [panitumumab news](,GGGL:2005-09,GGGL:en&q=Panitumumab+news) brings up our site *before* Amgen’s. I can say with complete confidence that we are the *only* patient-centered colorectal cancer advocacy site that is to-the-minute updated with prevention, research and treatment news and information.


Our second blog focuses [entirely on advocacy]( That blog is written by Dusty Weaver, our Grassroots Coordinator. Dusty lives in Arkansas and was a driving force in getting Arkansas House Bill 2781 turned into Act 2236. This legislation which took effect in August requires employers that offer health care policies to their employees to offer all eligible employees at the time of hiring or policy renewal a policy that includes colorectal cancer exams and lab tests within the coverage of the employee’s health care policy. There are many reasons that people who should be screened for colorectal cancer aren’t. Lack of insurance coverage is one of them. Legislation like this removes that barrier. The [advocacy blog]( is talking screening legislation but it’s also talking about NCI, NIH, FDA, CMS and other federal and local action around colorectal cancer.


I have comments open on both blogs, but it’s difficult to build community and get people talking and interacting. So now we’re about ready to unveil our [new message forum]( The forum is focused around advocacy, because news is still primarily one-way. It’s news. It’s reported. People can respond. It’s in grassroots advocacy that we must engage and get people talking. We haven’t fully announced the forum yet…but if you’re reading this and you’re interested, please [visit]( and register and start talking to us. No one likes to invest their time in a near-empty board, but you have to start somewhere. I can see from the stats that a lot of the referral traffic for [C3]( comes from right here, so as always I appreciate your support.


When my father was diagnosed in 1998, he didn’t have a chance and nothing much in the way of treatment was offered him. Sure, he had chemotherapy but it was all palliative treatment with no hope of truly regressing his disease. I know that had [C3]( been around then, and had the treatments and information we know now been around then we would have had more time with him. I’m not saying he would have beat the disease…but we would have had more time. Instead of living just 9 months after diagnosis, maybe he would have lived 2 years which is not unheard of now. Maybe he would have seen Emily walk or heard her first words. Maybe Laini would have more of a memory of him than she does now. That’s why I do what I do. That’s what drives me. Ten years from now, maybe a Stage IV colorectal cancer diagnosis will have better long term survival rates than it does now. Maybe we’ll even be beating it.

While we’re on the subject of Stage IV survivors, please think good thoughts for [Robb Kerr]( If you’re a member of [NAPP]( you may recognize his name. He was one of the original NAPP educators and was diagnosed with Stage IV colorectal cancer in 2002. Since then, he has been a patient advocate at Vanderbilt in Tennessee and has been an incredible fighter both for his own life and the life of others through his participation in clinical trials. He has also been an advocate for insurance coverage for colorectal cancer treatment. I met Robb in March and we immediately hit it off. Of course we talked Photoshop and NAPP and Mac/Windows…but his sense of humor reminded me a lot of my father. I know they would have been friends even though Robb is closer to my age than my father’s. Robb is battling “the beast” as my dad used to call it pretty hard now. As Robb himself said to me when we met, he’s “winning small battles but losing the war.” Damn.

By the way, I know that folks read my blog because I talk tech stuff…so I’ll blog a bit about the hows/whys of what I added to the [C3]( site in the next entry.

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