Offering hope for patients with rare type of kidney cancer

Seven years ago seems like yesterday to Ritchie Johnson. But much has happened since Sept. 20, 2012, the day she lost her son Chris, 39, to renal medullary carcinoma (RMC), a rare, aggressive type of kidney cancer. Today, Ritchie finds herself at the forefront of a campaign to raise awareness and support research to bring lifesaving therapies to patients with RMC at MD Anderson and around the world.

After her son’s 15-month illness, Ritchie was determined to turn her grief into a vehicle for hope. She began the process of establishing a nonprofit foundation in 2013, honoring her son’s desire to fill gaps in research funding and raise awareness of this little-understood disease associated with people carrying sickle cell trait.

“There were a lot of sleepless nights,” says Ritchie, who set aside her nearly 40-year career as a nurse while Chris was undergoing treatment at MD Anderson. “I had neither the heart nor the stamina to go back to my job after he passed. A year later I made the decision to get started on the foundation he had tried to establish.”

Thanks to Ritchie’s renewed efforts, the Chris “CJ” Johnson Foundation has been a catalyst for increased awareness as well as funding to support key research at MD Anderson and provide financial assistance to other patients. The foundation has a presence at community health fairs throughout the year, and Ritchie takes every opportunity to speak to college and high school students.

The annual Keepin’ It Renal 5K run/walk in Sugar Land, Texas, has become a spring tradition, this year netting $8,000 and attracting more than 375 registrants.

“These generous donations over the years have helped us perform important genomic analyses and in vitro and in vivo drug testing to design novel therapies to bring to the clinic,” says Nizar Tannir, M.D., professor and chair ad interim, Genitourinary Medical Oncology. “Enlightened by the insights we have gained from our preclinical and clinical studies, thanks in great part to funding from the Chris Johnson Foundation, we will be designing the next generation of clinical trials for patients with RMC. We will engage other academic institutions to join us to offer these therapies to patients with RMC at many sites in the United States.”

Tannir recalls his last conversation with Chris Johnson, shortly before he died. Tannir had shared the difficult news that all available therapies had been exhausted, to which Chris replied, “What do you mean? You are MD Anderson.”

“When I left Chris’s room, I felt defeated. RMC had won again and snatched the life of a young man, depriving his family of having him in their lives,” says Tannir. “I knew that we had to tap into all our resources to make a difference for future patients with this disease.”

To engage peers in this effort, Tannir and Pavlos Msaouel, M.D., Ph.D., assistant professor, Genitourinary Medical Oncology, launched a research program dedicated to understanding and developing therapies for RMC. The initiative has expanded in scope, attracting researchers in carcinogenesis, epigenetics, anatomical and translational pathology, molecular and computational biology, immunology, epidemiology and health care disparities from MD Anderson as well as Baylor College of Medicine, UT Health Science Center at Houston and the University of Strasbourg, France.

“Chris Johnson’s final words to me were the inspiration that prompted our odyssey to find the cure,” says Tannir. “We will honor Chris’s legacy and Ritchie’s dedication through the Chris Johnson Foundation by increasing our efforts. It is our commitment.”

MD Anderson is the only cancer center in the world offering clinical trials dedicated solely to this disease, with two currently ongoing, says Msaouel, who co-leads the RMC clinical trials with Tannir. The first trial is testing whether the combination of the targeted therapy ixazomib with chemotherapy can improve the outcomes of patients with RMC. The second trial is testing the efficacy of immune checkpoint therapies and attempts to understand the immune microenvironment and biomarkers of response to immunotherapy in patients with the disease.

“The Chris Johnson Foundation not only provides research support that allows the development of our clinical trials and furthers our understanding of how and why renal medullary carcinoma happens, but it also has been instrumental in raising awareness,” says Msaouel. “Progress in both research and therapy would be much slower were it not for Ritchie’s efforts.”

Despite the foundation’s many successes, the caregiver-turned-cancer advocate who has been its driving force admits the past seven years have been “extremely hard.”

“I find peace in helping others,” says Ritchie, who collected her experiences in “Mama I’m Tired: A Mother’s Journey Through Her Son’s Cancer Battle With Renal Medullary Carcinoma,” published last year. “I don’t want anyone to feel alone in their walk down this path.”