The Chris “CJ” Johnson Foundation Inc raises awareness on renal medullary carcinoma

SUGAR LAND, Texas — The Chris “CJ” Johnson Foundation Inc., created in memory of Chris Johnson after his battle with Renal Medullary Carcinoma (RMC), continues its mission to raise global awareness of this rare and aggressive cancer linked to the sickle cell trait. The 501(c)(3) nonprofit, founded in 2013, works to educate at‑risk communities, support patients facing medical expenses, and advance research at MD Anderson Cancer Center.

The Chris CJ Johnson Foundation: A Mission Rooted in Personal Loss

Chris Johnson was 38 when he sought medical care for severe back pain and blood in his urine. Doctors soon diagnosed him with RMC, a fast‑moving kidney cancer that often appears at Stage IV. Johnson fought the disease for 15 months with determination and faith. During treatment, he recognized the lack of advocacy for RMC and envisioned a foundation that would change that reality.

His mother, Ritchie Johnson, fulfilled that vision after his death in 2012. She established the foundation to honor his life and ensure others receive the awareness and support he never had.

The Chris CJ Johnson Foundation: Expanding Education and Early Detection

The foundation focuses on early diagnostic testing and community education. It builds partnerships with:

• Primary care physicians
• Urology specialists
• Oncologists
• Hospitals and cancer centers
• News media
• Legislators
• Community organizations

These collaborations help strengthen research and improve understanding of RMC biology. Increased awareness may also encourage individuals with the sickle cell trait to seek timely testing.

What Is Renal Medullary Carcinoma?

RMC is a rare kidney tumor first documented in 1995, when researchers reported 34 cases. The North American Association of Central Cancer Registries later recorded about 240 cases between 1995 and 2012. Experts believe the true number may be higher because RMC is often misclassified as renal cell carcinoma.

The cancer progresses quickly and usually appears at Stage IV. Patients often present with:

• Blood in urine
• Abdominal or flank pain
• Weight loss
• A detectable abdominal mass

RMC occurs almost exclusively in young people with the sickle cell trait. The average survival rate is about 15 months after diagnosis. However, the Journal of the National Medical Association reported rare long‑term survivors when tumors were detected early and remained localized.

Understanding the Sickle Cell Trait

The sickle cell trait affects an estimated 300 million Americans. Although most carriers are African American, the trait also appears in Hispanic, South Asian, Southern European, and Middle Eastern populations.

Individuals with the trait carry one normal hemoglobin gene and one gene with the sickle cell mutation. They do not have sickle cell disease, but they may develop kidney complications over time. Other risk factors for RMC remain unknown.

Treatment Challenges and the Need for Research

Doctors have attempted to treat RMC with radical nephrectomy, chemotherapy, and palliative radiation. Yet outcomes remain limited because most patients receive a diagnosis at an advanced stage.

Experts recommend CT scans and comprehensive urinalysis for individuals with the sickle cell trait who experience persistent renal symptoms. Early detection and expanded research may significantly improve survival.

A Rare Cancer With Limited Funding

RMC remains one of the least researched cancers due to limited funding and low case numbers. Advocates say the lack of awareness contributes to delayed diagnoses and missed opportunities for early intervention.

In April, the William Guy Forbeck Research Foundation supported the first multidisciplinary RMC focus group. Physicians, scientists, and advocates from the United States, Europe, and the Middle East met to discuss new strategies for research and education.

Next Steps in the Fight Against Renal Medullary Carcinoma

Advocates outline several priorities:

• Increase public awareness of sickle cell status
• Expand education on RMC symptoms and treatment
• Train primary care providers on RMC risks
• Remove barriers to expert care
• Launch screening protocols for at‑risk patients
• Create a national and international RMC registry

A Legacy That Continues to Inspire

Chris Johnson’s determination, generosity, and spirit continue to guide the foundation’s work. His mother leads the organization with the same resolve he showed during his fight. The foundation remains committed to expanding awareness, supporting families, and pushing for research that may one day improve survival for those at risk.

For more information, video The Chris “CJ” Johnson Foundation’s website.