“Hey, would you like to provide your input on novel, ground-breaking research on rare cancers with researchers who have spent their lives understanding and defining the sciences involved?”
I wasn’t asked that question, necessarily, but might as well have been. My name is Mark Pilkenton. I’m an executive in a managed IT organization and have no medical research nor health care experience. I was pulled into the world of “rare cancers” with my own diagnosis of a paraganglioma in March 2018, just days after my 39
th
birthday.
Following surgery to remove the tumor from my chest and after a year of healing, I wanted to become involved in a community with which I now belonged. After reaching out to the Pheo Para Alliance, I was asked to consider being a part of the Department of Defense Congressionally Directed Medical Research Programs (CDMRP) as a consumer reviewer. I didn't really know what I was getting into, but I decided to jump in head first.
With the nomination letter and application completed, I was interviewed and accepted to fill the role of a survivor member on the review panel. I, alongside, researchers and other rare cancer advocates, were to review and provide feedback on grant applications requesting funding for rare cancer research. With that, I was immediately given approximately two months to review several research funding requests and formulate my understandings and potential impact on the community at large and share with various researchers, doctors and other scientists. Though I learned quickly my understanding pales drastically in comparison with others on the review board, my goal was to provide input from someone who has understood what staring into the face of hopelessness felt like. My input may not have come from a rich understanding of medical science, but feedback wrapped in the hope that ideas to overcome rare cancers offer tremendous possibilities for all those affected.
My time volunteering with this review panel has confirmed that I made the right career choice, primarily, but has also granted me insight into the world of medical research and how things get done. Grant requests for medical research go through an arduous process examining every detail major and minor. The individuals involved from conceptual creation to drafting, review to implementation, are interested in solutions and curing rare cancers. This offers hope for a future relieved of certain unknowns we have today. As a patient, I now more clearly understand that researchers are working very hard on finding answers to improve the lives of those living with rare cancer. I look forward to more experiences with the CDMRP and am excited to represent my community of survivors with paragangliomas and other rare cancers.
~Mark Pilkenton
