2022 Chris “CJ” Johnson Foundation Annual Report

  • January 09, 2023

Chris “CJ” Johnson Foundation – 2022 Annual Report

Thank you to our RMC community, sponsors, participants, and volunteers for making 2022 an incredible year. As we reflect on the past year; we would like to share our highlights with you as the RMC Movement continues. We were excited to expand our board of directors to include four new board members (Rex Everett, Curtis Threat, Alexa Jett and Charissa Moran).

 Our advocacy continues through:

Awareness

In our role as an advocate on behalf of patients, we continue collaborations with organizations such as, As One Foundation, National Organization for Rare Diseases, Kidney Cancer Association, Kidney Can, Answer Cancer (AnCan), Inspire, Ryse Williams Charitable Foundation, Houston Sickle Cell Collaborative, WDConSCT, RMC Alliance, NSCRXPTION, and Ricky Casey Trust Foundation (UK) to explore ways to bridge the gap in health disparities and hopefully alleviate barriers to patients needing access to clinical trials regardless of which state they live in or insurance plan.

  • We continued our lobby efforts virtually in Austin and Washington DC on behalf of the RMC Community.
  • March 26, 2022 – Successful 9th Annual 5K Keepin’ It Renal Virtual Run/Walk.
  • July 2022 – Fish City Grill Fundraiser, Sugar Land, Texas.
  • August 2022 – Completed the advocacy video, “RMC Movement”, featuring Andre Snead, McKenna Wilburn, Anessa Ezeude, Dr. P Msaouel and Dr. N. Tannir.
  • November 2022 – Completed documentary, “The Chris Johnson Story”.
  • November 2022 – Celebrated the Chris “CJ” Johnson Foundation’s 10th Anniversary and the Heavenly birthday of CJ at Pelazzio’s.
  • December 2022 – Fish City Grill Fundraiser.

Education

Jan – Dec 2022-The only RMC support group in the world remain strong. This group caters to RMC patients, caregivers, and individuals who lost a loved one to RMC. This virtual group is held monthly on the 2nd Tuesday. Added a Saturday support group to accommodate our RMC community in other countries. Our RMC Support Group continues to grow outside of the USA to include Colombia, Australia, United Kingdom, Greece, Brazil, and Canada.

Speaker at:

  • August 2022 – Houston Sickle Cell Collaborative.
  • September 2022 – The Ryse Williams Basketball Classic in Redondo Beach, California.
  • September 2022 – Sickle Cell Trait – 360 Symposium.
  • October 2022 – The National Association of Health Service Executives (NAHSE Houston Chapter).
  • 2022 – Served on Kidney Cancer Association patient care advisory council.

Research

  • November 2022 – Attended the International Kidney Cancer Symposium sponsored by Kidney Cancer Association in Austin. Researchers from all over the world discussed their kidney cancer research.
  • March 2022 – Donated $9,000 to UT MD Anderson Cancer Center to continue RMC research.
  • UT MD Anderson Cancer Center opened a third clinical trial specifically designed for RMC. RMC Average survival rate has increased to 15 months. Through advocacy and research there is a better understanding as to why RMC happens in some individuals with sickle cell trait and not others.

 Emotional/Financial Support

Year 2022 – Donated $20,000 in financial support to patients traveling to Houston for treatment and to other patients in need to offset medical expenses.

We continue to offer 24-hour support to RMC patients/families who has or had a loved one diagnosed with RMC.

We continue to connect RMC patients with expert physicians at UT MD Anderson Cancer Center.

We will never lose HOPE! The RMC Movement will continue until renal medullary carcinoma is completely eradicated.