Governor Rendell & Awareness Opportunity

What I had previously referred to as a press conference with Governor Rendell turned out to be the taping of the WITF-PBS show Smart Talk with Governor Rendell as the guest. David Botero, along with Kevin Gibson (you’ll remember them both from the Hope in Handball fundraiser last year) were instrumental in orchestrating our presence at the taping. David and Kevin along with Lucille, Vicki & Rob, Jeff and I were members of the audience.

Although we were unable to make our presence known in the show, we were able to talk to many of the WITF staff, other members of the audience and pass out information, pins, and bracelets. Several of us were able to have brief conversations with Governor Rendell and give him the material as well. Hopefully we have planted a seed that will grow into even greater opportunities for creating awareness about carcinoid/NET cancers.

Many thanks to David and Kevin for their continued efforts to create awareness and bring attention to our cause and to Lucille, Vicki & Rob, and Jeff for being willing to join us with just a half days notice.

Tragic Event Creates Awareness Opportunity in the Media

The state of Pennsylvania is morning the loss of the Lt. Governor, Catherine Baker Knoll. It is well known that her death was the result of complications from treatment of a neuroendocrine cancer, although as far as I am aware the specific type of neuroendocrine has not been reported. While being respectful of Baker Knoll’s family’s wishes to keep the specifics of her disease private and being respectful of the fact that they are mourning the loss of a loved one, we can use this sad occasion as an opportunity to create awareness of carcinoid/NET cancers.

Please join me in efforts to bring awareness of carcinoid/NET cancers and the need for proper treatment diagnosis and monitoring by bringing attention to any misinformation you see or hear and using it as a catalyst for spreading accurate information. This morning I came across a news article, prompted by the death of Baker Knoll that presented inaccurate information about carcinoid/NETs, including misinformation quoted by a doctor. I wrote to the reporter, bringing the misinformation to her attention and expressing that it is because of such information that the seriousness of carcinoid/NET cancers are dismissed and that some patients suffer unnecessarily and die prematurely.

If you come across information that is incorrect but don’t personally want to respond, bring it to the list’s attention so someone else can. If you like to write, consider writing a letter to the editor of your local paper. If in your letter you reference an article about Baker Knoll’s death that was already run you improve your chances of being published. Check the paper for the guidelines about submitting letters. (And, if you are like me you may need to curb the urge to express your anger about the situation since the information will be better received if it comes through in a kind tone.)

We as patients can make a difference, not only for ourselves but also for the next generation of patients diagnosed with a carcinoid/NET cancer. Let’s seize the opportunities to education the public and medical community—even if it is one doctor or one person at a time, it is worth it if it helps one person be diagnosed earlier or treated properly.