2024 CHRIS “CJ” JOHNSON FOUNDATION INC. ANNUAL REPORT

  • January 17, 2025

2024 Annual Report

We extend our deepest gratitude to the Board of Directors, the RMC community, sponsors, participants, and volunteers. Your unwavering support has made 2024 an extraordinary year. As we celebrate our collective achievements, we are thrilled to share the highlights of this impactful year, showcasing how the RMC Movement continues to grow and inspire change.

Advocacy

As patient advocates, we are proud to announce new collaborations with the National Cancer Institute’s MyPart initiative. This partnership focuses on raising awareness of renal medullary carcinoma (RMC), correcting misconceptions about the benign nature of sickle cell trait and addressing health disparities. Our mission is to eliminate barriers that prevent patients from accessing clinical trials, regardless of their location or insurance coverage.

2024 Highlights:

  • March: Hosted the 11th Annual 5K Keepin’ It Renal Virtual Run/Walk, attracting 500 participants worldwide. Pasadena, California, held its first organized walk with 100 participants, while Greece and the UK also hosted successful walks.
  • April: Represented the foundation at the Leadership Meeting organized by the Sickle Cell Consortium in Atlanta, Georgia.
  • May: Milton Wade, volunteer, and advocate (Chris “CJ” Johnson Foundation) met with a representative from City Councilman Yuseef Salaam’s office and the representative agreed to co-sponsor two bills: Int 0341-2024, requiring NYC’s Department of Education to report the number of students with sickle cell disease or trait, and RES 0168-2024, urging New York State to pass the Sickle Cell Treatment Act.
  • June: Fundraiser at Fish City Grill Sugar Land, Ritchie attended patient care seminar organized by the Kidney Cancer Association at UT MD Anderson Cancer Center, Ritchie spoke at Houston’s Juneteenth and World Sickle Cell Day events that was sponsored by As One Foundation.
  • July: Ritchie and Milton Wade attended and spoke at the Sickle Cell Warrior’s Convention in Atlanta, Georgia.
  • August: Ritchie and Andre Snead (RMC Warrior) attended a Meet and Greet in Houston, Texas, featuring advocates Rick Davis (AnCan), and Alexa Jett (Board Member of Chris “CJ” Johnson Foundation)
  • September: Heighten awareness for Sickle Cell Disease and Trait through social media campaigns.
  • November: Ritchie attended the IKCS: North American Symposium in Louisville, Kentucky, and both Milton and Ritchie participated in the KCIA Full Alliance Focus Group Meeting in Baltimore, Maryland.

Education

Empowering patients and families through education is a cornerstone of our work. This year, we continued to share knowledge and build resources to support those impacted by RMC and sickle cell trait.

2024 Educational Efforts:

  • Presented at the 11th Annual Sickle Cell Patient and Family Educational Symposium.
  • Served on the Kidney Cancer Association’s Patient Care Advisory Council.
  • Completed the rough draft of a patient education booklet, which will be finalized and distributed in 2025.

Research

Advocacy and research are bridging the gap between sickle cell trait and RMC, driving advancements in understanding, intervention, and patient outcomes.

Key Research Developments:

  • November: Participated in the International Kidney Cancer Symposium sponsored by the Kidney Cancer Association, where global researchers shared insights and progress in kidney cancer studies.
  • Clinical Trials: UT MD Anderson Cancer Center launched its 4th clinical trial tailored to RMC patients, with plans for a 5th trial underway. These efforts have improved the average survival rate for RMC patients to 15 months. One patient has already enrolled in the latest trial.

Financial Support

In 2024, the Chris “CJ” Johnson Foundation provided direct financial assistance to RMC patients and contributed to advancing research.

  • We continue to provide financial assistance to RMC warriors, helping offset medical expenses and airfare to Houston for treatment.
  • Additional support was extended to ensure that patients facing financial hardships could access quality care and critical treatment.
  • Made a significant financial donation to UT MD Anderson Cancer Center to support ongoing research initiatives aimed at improving RMC outcomes and exploring innovative therapies.
  • Collaborated with American Association for Cancer Research (AACR) to fund a scholarship in conjunction with KCA aimed at supporting an early-career researcher focused on kidney cancer.

Milestones and Celebrations

  • March: Gabrielle, Chris’ daughter, graduated from high school, marking a significant personal milestone for our foundation family.
  • October: Ritchie had an opportunity to meet Lois, the mother of Feninna in Athens, Greece.
  • RMC Support Group continues to expand its reach, providing vital support to RMC patients and their families around the world.

We remain committed to fostering hope, advancing research, and providing unwavering support for the RMC community. Thank you for standing with us on this journey. Together, we are an unstoppable force for RMC awareness and change.