In 2001, I worked as a computer consultant, after having had a long career as a computer systems manager with various New York City agencies. At that time, I was under the care of a gastroenterologist for heartburn. He ordered a routine ultrasound test, which was performed prior to the endoscopy. The ultrasound results revealed a 6.8 cm tumor; further testing confirmed kidney cancer that was confined to the kidney and was not metastatic.
After educating myself about kidney cancer, I realized that this cancer did not have much research funding. Federal funding was low as compared to other types of cancer, and there was hardly any private funding, with the major kidney cancer organization at the time investing its resources into patient education and running medical conferences. So, in 2003, I founded Action to Cure Kidney Cancer (ACKC), whose primary goal is to increase funding for kidney cancer research. By 2004, I made the decision to retire so that I could devote myself fulltime to fighting kidney cancer. Based on the efforts of ACKC and with the support of several U.S. Senators who sponsored Dear Colleague letters in 2006, Congress designated kidney cancer as a topic area within the Congressionally Directed Medical Research Programs (CDMRP) Peer Reviewed Medical Research Program, and in 2009 the topic area was placed under the Peer Reviewed Cancer Research Program. Dr. Maria F. Czyzyk-Krzeska from the University of Cincinnati was one of the first investigators to receive a grant for her work to identify genes involved in the causation of clear cell carcinoma.
In 2015, ACKC met with the Ranking Member of the House Appropriations Committee to make our case for increased funding. As a result of our meeting in fiscal year 2017 the Kidney Cancer Research Program (KCRP) was established as a separate program within the CDMRP with a $10 million congressional appropriation.
I am honored to have served on the KCRP Programmatic Panel for the past 3 years. I was very impressed with the quality and breadth of knowledge of the panel members as well as the quality of the research awards. I am confident that, in time, the KCRP-funded research will have a significant impact on the progress of kidney cancer research and on the lives of those who are stricken by this disease. I feel that the Department of Defense’s decision to include consumer advocates in the grant application process was a very wise choice. Not only do the consumer advocates represent the interests of patients and caregivers, but, from my perspective, including consumer advocates helps to ensure that the selection process is fair and objective. From my experience, I feel that the Programmatic Panel members are dedicated to selecting the most qualified applications for funding. The existence of KCRP and my work serving on the KCRP Programmatic Panel have been the culmination of the 17 years that I have spent being a kidney cancer advocate.
Last updated Tuesday, September 8, 2020