More than 8 years ago, she was diagnosed with stage IV lung cancer. For the past 8 years, she has worked tirelessly on behalf of lung cancer research and advocacy. Among other things, she served as a patient representative to panels run by the Congressionally Directed Medical Research Programs (CDMRP).
What is the CDMRP? From its website:
The CDMRP originated in 1992 via a Congressional appropriation to foster novel approaches to biomedical research in response to the expressed needs of its stakeholders-the American public, the military, and Congress.
One of the specific and unusual aspects of the program is that they involve consumer advocates throughout the program cycle – that’s what my sister did for several program cycles.
She was even profiled on the CDMRP’s website (and/but you'll notice I had to go to the Internet Archive to find "her" page). What she said about her association with the CDMRP is:
The work is hard, especially for someone like me who lacks a scientific background. The opportunity, however, to participate in something so important makes all the hours spent sweating over the applications thoroughly worthwhile. I feel tremendous hope for the future when I get to see what the researchers are working on, and I am always honored and humbled to share a conference table with the brilliant scientists who are superheroes to me and my fellow patients. To be able to provide the patient perspective on proposed research is a gift that I cherish, and I take great pride in the work I have been able to do for the LCRP.
Besides the fact that it’s her birthday, why am I writing about this?
Because the current year’s budget for the CDMRP is about 43% of what it was last year, and lung cancer has been cut out altogether.
What kind of cancer kllls more people than any other, by a lot? LUNG CANCER.
If you feel up to it, please complain to your congressional representative. And if you have a few spare nickels, please consider a donation to Lungevity. Thanks.