2023 Chris “CJ” Johnson Foundation Inc. Annual Report
- January 06, 2024
We extend our heartfelt gratitude to the Board of Directors, the RMC community, sponsors, participants, and volunteers for contributing to the success of 2023, making it an extraordinary year. As we take a moment to reflect on the past year, we are excited to share our highlights with you as the RMC Movement continues to flourish.
Our advocacy continues through:
Awareness
In our role as patient advocates, we are pleased to announce our recent affiliations with two esteemed organizations this year: the Kidney Cancer Association, and the National Cancer Institute – MyPart. Together, we are dedicated to collaborative efforts aimed at increasing awareness of renal medullary carcinoma (RMC), dispelling misconceptions surrounding the benign nature of sickle cell trait and identifying effective strategies to address health disparities. Our overarching goal is to remove barriers for patient seeking access to clinical trials.
We are unwavering in our commitment to ensure that geographical location or insurance coverage does not impede individuals diagnosed with RMC from gaining access to institutions with cutting edge research. To highlight our dedication and engagement, we participated in several impactful events throughout the year:
• February 25th – Participated in NORD Rare Disease Day
• February 26-28th – Participated in the AUA meeting and lobbying in Washington DC
• March 25th – Successful 10th Annual 5K Keepin’ It Renal Virtual Run/Walk. (attracting approximately 400 participants in person and virtually)
• June & December – Fish City Grill Fundraiser.
• September – Milton Wade actively participated in a public hearing, in New York City discussing Proposal 968-A. In October, the proposal was unanimously passed. The significant development will play a crucial role in providing support and assistance to individuals with sickle cell disease and sickle cell trait.
• Attended KCIA Full Alliance Quarterly Meetings
Education
Speaker at:
• July 18th-23rd– Speaker at the 10th Annual Sickle Cell Patient and Family Educational Symposium
• September 9th – Speaker for Kidney Cancer Association Virtual Symposium.
• November 9th-11th – Speaker at the IKCS: North American Symposium
• December 7th-8th – Participated in advocacy panel at Bridging the Gap: SMARCB1 Mutated Tumors Conference sponsored by National Cancer Institute and Texas Children’s Hospital
• Served on Kidney Cancer Association patient care advisory council.
• Worked with Boston University School of Public Health (BUSPH) to create a sickle cell trait campaign
Research
Advocacy and research efforts have led to a deeper understanding of why renal medullary carcinoma (RMC) occurs in some individuals with sickle cell trait and not in others. By bridging the gap between advocacy and scientific inquiry, we are advancing our understanding of the relationship between sickle cell trait and RMC, paving the way for more targeted interventions, improved awareness, and ultimately, better outcomes for individuals at risk.
• November – Attended the International Kidney Cancer Symposium sponsored by Kidney Cancer Association in Austin. Researchers from all over the world discussed their kidney cancer research.
• UT MD Anderson Cancer Center opened a third clinical trial specifically designed for RMC and began working on the 4th trial. RMC Average survival rate has improved to 15 months.
Support
The year 2023 marked continued strength and resilience of the world’s only renal medullary carcinoma (RMC) support group. Dedicated to serving RMC patients, caregivers, and those who have lost a loved one to RMC, this virtual group convenes monthly on the 2nd Tuesday. To better accommodate our global RMC community, we introduced an additional support group session on the 4th Saturday of each month.
The reach of our RMC Support Group has expanded beyond the borders of the United States, now extending to individuals in Colombia, Australia, the United Kingdom, Greece, Brazil, and Canada. This growth underscores the importance of fostering a global network of support, ensuring that individuals facing the challenges of RMC can connect, share experiences, and find solace irrespective of their geographical location. As we move forward, our commitment to provide a supportive and inclusive space for the RMC community remains firm.
• Donated $10,000 in financial support to patients traveling to Houston for treatment and to other patients in need to offset medical expenses.
• March – Donated $5,000 to UT MD Anderson Cancer Center to continue RMC research
• Continue to offer support to 23 patients that have been diagnosed with RMC. Remain in contact with 16 families that have lost loved ones to RMC.
• Provide around the clock support to RMC patients and their families, helping those who have experience or are currently facing the challenges of a loved one diagnosed with RMC.
• We continue to connect RMC patients with renowned physicians at UT MD Anderson Cancer Center.
Our mission is grounded in the belief that through continued support, advocacy and collaboration, we can make a lasting impact on the lives of those affected by RMC.