Chris “CJ” Johnson Foundation 2025 Annual Report

  • December 27, 2025

Turning Grief into Action. Advocacy into Hope.

Our Mission

The Chris “CJ” Johnson Foundation is dedicated to raising awareness, advancing research, and providing compassionate support for individuals and families impacted by renal medullary carcinoma (RMC)—a rare and aggressive kidney cancer primarily affecting individuals with Sickle Cell Trait.

2025 Highlights & Accomplishments

Signature Awareness Events

  • Successfully hosted the 12th Annual Keepin’ It Renal Run/Walk – Unstoppable Force for RMC Awareness on March 22, 2025, uniting patients, families, advocates, clinicians, and supporters both locally and virtually.
  • Coordinated Team Greece the 12th  Keepin’ It Renal Run/Walk held in Volos and Crete, Greece, expanding global awareness and solidarity.
  • Coordinated with team in Pasadena, California to organize the 2nd Annual Keepin’ It Renal Run/Walk in Pasadena, California on March 15, 2025.

These events honored lives lost, uplifted RMC warriors, and strengthened national and international awareness efforts.

Launching New Support Initiatives

  • Launched Forever Connected: Beyond the Battle, a dedicated support initiative for families who have lost a loved one to RMC.

This initiative provides a safe, compassionate space for grief support, healing, remembrance, and continued connection within the RMC community.

Expanding Global Support

  • Continued growth of the Chris “CJ” Johnson Foundation RMC Support Group, connecting RMC patients and families worldwide.
  • The support group provides education, emotional encouragement, shared experiences, and access to trusted resources—fostering hope and community across geographic boundaries.

Financial Support & Research Investment

  • Continued providing direct financial assistance to RMC warriors to help offset medical expenses and airfare to Houston for specialized treatment.
  • Donated $5,000 to UT MD Anderson Cancer Center to support ongoing renal medullary carcinoma research initiatives.
  • Collaborated with the American Association for Cancer Research (AACR) and the Kidney Cancer Association (KCA) to fund a scholarship supporting an early-career researcher focused on kidney cancer.

Every dollar raised directly supports patients, families, advocacy efforts, and lifesaving research.

Advocacy, Education, and Research

  • Ritchie Johnson and Milton Wade represented the Foundation at AUA Advocacy Days in Washington, DC (March 1–5, 2025), advocating for increased federal funding and awareness for rare kidney cancers.
  • Both also attended the AUA Advocacy Summit in Baltimore, Maryland (December 2025), continuing to elevate the voices of RMC patients and families at the national level.
  • MD Anderson Cancer Center advanced work toward a fourth clinical trial tailored specifically for RMC patients, contributing to improved outcomes, longer survival times, and an increasing number of patients achieving no evidence of disease.
  • Ritchie Johnson attended the Sickle Cell Consortium Leadership Conference in Atlanta, Georgia, strengthening partnerships and reinforcing education on the link between Sickle Cell Trait and RMC.
  • Participated in the Sickle Cell Trait Expert Advisory Panel Kickoff Meeting with Boston University (May 27, 2025). Subsequent educational sessions were held the latter part of 2025.
  • Launched the Sickle Cell Educational Toolkit for both the public and medical professionals to improve awareness, early recognition, and education.
  • Highlighted ongoing RMC research efforts led by renowned physicians Dr. Pavlos Msaouel and Dr. Daniel Shapiro, advancing scientific understanding and treatment options.

Amplifying the Patient Voice

  • Ritchie Johnson’s personal story honoring her son, Chris “CJ” Johnson, and detailing the Foundation’s advocacy journey was submitted to and accepted by the American Urological Association (AUA) in April 2025 in Las Vegas, Nevada.

Governance & Leadership

  • Welcomed Ronald West as a new Board Member in October 2025. His leadership, advocacy experience, and commitment to service strengthened the Foundation’s capacity to support the RMC community.

Our Impact

  • Increased national and global awareness of renal medullary carcinoma.
  • Strengthened advocacy efforts at the policy, research, and medical professional levels.
  • Expanded emotional, financial, and educational support for RMC patients and bereaved families.
  • Elevated patient and caregiver voices within the medical and research communities.
  • Continued support of the AACR Scholars Program (April 2025).

Looking Ahead

As we move forward, the Chris “CJ” Johnson Foundation remains committed to:

  • Expanding education and advocacy initiatives
  • Supporting groundbreaking research and clinical trials
  • Growing support services for RMC patients and families who have lost a loved one
  • Ensuring that Chris “CJ” Johnson’s legacy—and the legacies of so many others—continue to save lives.

We are deeply grateful to our supporters, partners, volunteers, and the families who trust us with their stories. Together, we are turning grief into action, advocacy into hope, and honoring CJ’s legacy every step of the way.

“Together, we are an unstoppable force for RMC awareness