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Why I'm "Here"

I did not choose to be on this Lung Cancer Patient/Advocacy Road; it chose me. Had my late mother not been diagnosed with late stage inoperable lung cancer, I can say with a fair amount of certainty, I would not be on this road. We never considered the possibility of lung cancer because we did not know the facts. Lung Cancer is Not Just for Smokers.
I became an advocate because I did not want one other family to face the shock that our family did. NO ONE IS IMMUNE from a lung cancer diagnosis. My goal is to empower people with information in order to give them a fighting chance. My goal is to reframe the issue of lung cancer in order to address the social stigma currently associated with the disease. My goal is to support increased lung cancer research to find the cure.

Wednesday, September 29, 2010

The future of lung cancer advocacy

What is lung cancer advocacy and what is the goal of those advocates? Are the "lung cancer advocacy groups" working at optimal efficiency? Those are some of the questions that should be asked. The first one is easy - anyone who tries to impact current incidence and mortality rates associated with the disease could be identified as an advocate - that includes the medical profession. I would add the word activist - an overt effort to effect change.
Now are any of the myriad lung cancer nonprofits (including ours) working at optimal efficiency - alas that answer is a resounding NO.
Why do I said that? Firstly let's divide the nonprofits into those whose primary goal is raising funds for research. With all due respect and with accolades for their efforts, none of them have raised significant dollars. What if groups like Lungevity, United Against Lung Cancer, Lung Cancer Foundation of America and New York Lung Cancer Foundation would combine efforts; what if they would staff one or two PHd's to vet their collective projects (not rely on outside Scientific Advisory Board) wouldn't that really make a difference?

What if the one or two national lung cancer groups that are battling each other to create state chapters would abandon that effort and redirect their focus to a national public awareness campaign? Currently they are tripping over each other; wasting money on summits whose primary purpose (not broadcast) is to scout out potential organizers to further their individual branding. Unless a health oriented nonprofit is focused on grassroots patient services there is no need for state chapters and all the overhead that goes along with it. Limited funds need to be spent wisely. The campaign to brand an individual group, t us, is not spending money wisely. More to come

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