The Chris “CJ” Johnson Foundation Inc., established in 2013, is a 501 (c)3 non-profit charity organization based in Sugar Land, Texas. Our mission is to find a cure for Renal Medullary Carcinoma (RMC) worldwide through awareness, education, and research. Our primary focus is on individuals with sickle hemoglobinopathies such as sickle cell trait (SCT), who may be at risk for this rare and aggressive form of kidney cancer. In addition, the foundation offers emotional, spiritual and financial support to individuals diagnosed with RMC, and donate funds annually to The University of Texas MD Anderson Cancer Center to advance RMC research.

Our vision is to establish partnerships with primary care physicians, urology specialists, oncologist, hospitals, news media, legislators and community-based organizations. Collaborative multi-institutional efforts are needed to better understand the biology of RMC. Heightened awareness may potentially enable individuals with SCT to better understand the importance of pursuing early diagnostic testing.

WHAT IS OUR NEXT STEP?

There are many foundations and medical facilities conducting research on breast cancer, lung cancer, colon cancer, etc., but very little on kidney cancer and specifically RMC. There is a need to increase awareness in areas with high prevalence of sickle cell trait and other sickle blood disorders. We are advocating for a CHANGE. It is our desire that individuals with sickle cell trait are informed of the potential risk of RMC. It would be appropriate for individuals that are trait carriers and have persistent or recurrent renal symptoms to have radiological studies (CT Scan) and a comprehensive urinalysis. Getting the word out is the greatest gift that I can give to my son.

We must work together to support the researchers, medical professionals, advocates and organizations dedicated to treating and curing this disease. To honor the memory of the loved ones that we have lost or that are fighting for their life, let us drive progress to enhance cancer prevention, detection and treatment.