Patient Council

A native of Bogota, Colombia, my father was diagnosed with advanced renal cancer in 2011. He lost his battle with the disease nine months later. During those months of treatments, my background in microbiology proved helpful as I received a hands-on education in kidney cancer, from learning to recite a pharmacopeia of drugs to understanding and navigating the complex treatment regimens and associated side effects. Perhaps hardest for me to wrap my hands around was the general lack of awareness and that there was – and still is – no method for early detection when the cancer is most treatable.

Despite the toll kidney cancer took on my father and our family, it exposed us to an amazing community of people who did their best to help in any way they could. It also left me with an unintended gift – experience as a kidney cancer advocate and the empathy for those who need one. Currently living in the Washington, D.C., area, I am passionate about patient education and helping build awareness of this disease. Over the years, I have served as a patient advocate with the AACR (American Association for Cancer Research), ASCO (American Society of Clinical Oncology), the American Cancer Society and the Kidney Cancer Association.

I became interested in cancer research advocacy and patient advocacy when I noticed significant differences in patient experiences after a cancer diagnosis. Having earned a doctorate in health care administration, my research interests lie in health education, health promotion, and cancer prevention and healthier lifestyle interventions, with a focus on underserved populations. I hope to bring attention to equity in cancer care as well as support services for all those diagnosed with cancer and their caregivers. I have published articles in peer-reviewed journals on the topics of community-based participatory research with use of peer educators from minority populations.

A significant part of my advocacy efforts involve collaborating with national organizations and state agencies. Through my participation in national meetings and review panels, I’m able to share information with researchers about how cancer impacts patients and their communities culturally.

I currently serve as Chair of the ASCO (American Society of Clinical Oncologists) Health Equity & Outcomes Committee, and I am a panel member with the Canadian Institutes for Health Research (CIHR). In addition to working with the Patient-Centered Outcomes Research Institute (PCORI) as a Merit Protocol Reviewer, I am a past member of PCORI’s Clinical Trials Advisory Panel. I am actively involved with the Society of Urological Surgical Associates (SUNA) and the American Association for Cancer Research (AACR), and I review manuscripts on behalf of the Urologic Nursing Journal and the Journal of Health Care for the Poor and Underserved.

Professionally, I work in public education with the Austin ISD in Austin, Texas. I am also an adjunct professor at Huston-Tillotson University.

My passion is serving as a bridge between the patient and scientific communities. I have become increasingly involved in patient advocacy following my diagnosis with breast cancer in 2004 and subsequent treatment at UT Southwestern, and now my goal is to help patients and those who love them understand all kinds of cancer research, from basic science through clinical treatments.

Educated as a biomedical engineer, I appreciate medical research, and I volunteer as a patient advocate for many different cancers in a number of different capacities, including ECOG-ACRIN, part of the National Cancer Institute (NCI) National Clinical Trials Network, and the Advocate Engagement Working Group for the NCI Council of Research Advocates, the advocate advisory board to the Director of the NCI. For the past five years, I have been the National Patient Advocate for the NCI Physical Sciences-Oncology Centers program, where I directed advocacy activities at all 12 centers within the network. Recently I became one of four founding editors of a new journal, Convergent Science Physical Oncology, which will include the patient voice in every aspect of the publication and review process.

I am excited by the opportunity to participate as a member of the KCP Patient Council and to work with a dedicated group of researchers, clinicians, and advocates to develop an active and engaged community that will make a significant impact in the lives of those affected by kidney cancer.

Born, raised, and educated in Germany, I left the country in 1963 to work for the French subsidiary of a major German corporation. After a 30-year career managing company operations in a number of different countries, my wife and I finally retired to Florida in 1997. Not long after, we relocated to Dallas to be near our daughter and my wife’s mother. I now had time to take up hobbies and pursue personal interests, however, it did not satisfy me. I wanted to do something meaningful and rewarding. Volunteering with a hospice organization and visiting patients during the last phase of their lives provided me with that opportunity.

In 2011, my wife fell ill with kidney cancer. It was a very complicated case and an extremely dangerous variety of the disease. We owe her life to the highly competent and caring doctors at UT Southwestern, who removed one of her kidneys and eradicated the disease. For seven years she was cancer-free until suddenly, in 2018, it came back in her lungs. State-of-the-art radiation helped prevent the tumors from spreading.

As a caregiver, I know that the disease does not only affect the patient but also the whole family. Out of gratitude for saving the life of my wife, I decided to volunteer for the Kidney Cancer Program, giving patients encouragement and hope, knowing that strengthening the fighting spirit can be a decisive factor in stabilizing the condition of a person who is battling cancer.