Chris “CJ” Johnson Foundation Inc. 2020 Annual Report

  • February 20, 2021

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 2013, our focus continues in the following areas: Advocacy, Education, and Research

2020 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 (NORD), Kidney Cancer Association, Kidney Can, AnCan, Inspire and Ricky Casey Trust Foundation (UK).

We continue to lobby virtually in Austin and Washington DC on behalf of the RMC Community.

Expanded our advocacy efforts  globally: UK, Greece, Brazil and Columbia and United States.

Hosted the “Annual 5K Keepin’ It Renal Run/Walk” as our major fundraiser event.

Rolled out the Unconscious Bias Campaign November 2020 to focus on healthcare disparities in the RMC community.

Delivered approximately 500 lunch boxes to First Responders that cared for COVID-19 patients.

We continue 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 type of insurance.

Updated the Chris “CJ” Johnson Foundation Inc website.

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

Education

Partnered with AnCan to organize the first and only Peer to Peer Support Group for RMC patients and their caregivers.

Speaker at several community base organizations health fair – held virtually, i.e. BNY Mellon Health Fair, Sickle Cell Advocacy Summit 2020.

Provided support to RMC patients globally and within the United States.

Organized Community Support Group with Inspire. This is a community where patients with same diagnosis and their caregivers can connect anonymously to get answers.

Work closely with Kidney Cancer Association by serving on their “Patient & Caregiver Advisory Council”.

Research

The University of Texas  MD Anderson Cancer Center in Houston, Texas now has two clinical trial specifically for patients with Renal Medullary Carcinoma (RMC).

We have offered 24-hour support to eight patients/families who has or had a loved one diagnosed with RMC. We continue to connect RMC patients with expert physicians at MD Anderson.

Donated $5,000 to The University of Texas MD Anderson Cancer Center to advance RMC research.

Donated $10,000 in financial support to patients traveling to Houston for treatment and to other patients in need to offset medical expenses..