Chris “CJ” Johnson Foundation 2021 Annual Report

  • January 10, 2022

 2021 Annual Report

Our Vision: To eliminate healthcare disparities and find a cure for renal medullary carcinoma (RMC).

Our Mission: to be a global community dedicated to creating awareness and alleviating healthcare disparities for patients diagnosed with RMC through advocacy, education, and research

Since the foundation was established in 2012, our focus continues in the following areas: Advocacy, Education, and Research.

2021 Highlights – Program Accomplishments

Advocacy

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, AnCan, Inspire, Lazarex Cancer Foundation, Diverse Hub, Patient Empowerment Network and Ricky Casey Trust Foundation (UK), WDConSCT, NSCRXPTION, and RMC Alliance Foundation.

We continued to lobby virtually in Austin and Washington DC on behalf of the RMC Community in March and August 2021.

Our advocacy efforts are global: UK, Greece, Brazil, Canada and Columbia and United States.

March 27, 2021– Successful 8th Annual 5K Keepin’ It Renal Virtual Run/Walk

May 14, 2021 – Set up booth at Sugar Land Town Square (In person)

June 1, 2021 – Fundraiser and Awareness at Fish City Grill – Sugar Land, Texas

November 4-6, 2021 – Booth at International Kidney Cancer Association Meeting

December 7, 2021 – Fundraiser, Awareness and Toy Drive at Fish City Grill – Sugar Land, Texas

**We continue to work with other community base organizations to explore ways to bridge the gap in health disparities and hopefully alleviate barriers to individuals needing access to clinical trials regardless of which state they live in or type of insurance.

Chris “CJ” Johnson Foundation website completely re-done.

Continue to mail information to Family Practice, Pediatricians and Primary Care Physicians regarding renal medullary carcinoma

Working on a documentary for RMC Community and Advocacy

Education

Jan – Dec 2021-We have the only RMC support group in the world that caters to RMC patients and their caregivers. This virtual group is held monthly on the 2nd Tuesday.

April 10 -15, 2021 participant of ACCR-SSP program (Virtual)

April 22, 2021, speaker “Sickle Cell Trait 360: Full Spectrum Education Symposium (Virtual)

June 11, 2021- Appeared on GMA3 – segment on Renal Medullary Carcinoma (Virtual)

June 15, 2021- Speaker for Lazarex Cancer Foundation – Disrupting the System

August 27 -28, 2021- Sickle Cell Warriors Convention – Speaker – Trait Tract: The Kidney Connection (Virtual)

September 17-18, 2021 – Speaker KCA Virtual Patient Symposium

November 4-6, 2021 – Participant of KCA Think Tank: Coalition for a Cure 2021

Working with other community-based organizations as an advocate for equitable access to affordable and comprehensive health insurance coverage.

Partnered with organizations that have a track record in addressing social determinants of health to reduce health disparities.

Serve on Kidney Cancer Association patient care advisory council.

Provided support to RMC patients globally and within the United States

Research

Donated $35,000 to UT MD Anderson Cancer Center since 2016 to advance RMC research.

UT MD Anderson Cancer Center has completed the first two clinical trials specifically designed for RMC. Results are to be published this year 2022. They will be opening the 3rd clinical trial designed specifically for RMC patients. Through advocacy and research there is a better understanding as to how RMC happens in some individuals with sickle cell trait and not others. MD Anderson is now seeing 1-2 new patients each month and twice more from afar. As awareness increases, we can identify and help more patients.

Emotional/Financial Support

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

We have offered 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.