Chris “CJ” Johnson Foundation Inc Raises Awareness On Renal Medullary Carcinoma & Sickle Cell Trait

The Chris “CJ” Johnson Foundation Inc., established in 2013, is a 501(c) 3 non-profit charity organization based in Sugar Land, Texas. The primary goal of the foundation is to increase awareness of Renal Medullary Carcinoma (RMC) worldwide, while focusing on those individuals with the sickle cell trait, who may potentially be at risk for this rare and aggressive cancer. Donations/Grants will also be utilized to educate the public and financially support individuals with medical expenses. In addition, the foundation will offer financial support to MD Anderson Cancer Center in Houston Texas to advance RMC research.

In order to achieve the goals of this foundation, it is important to establish partnerships with primary care physicians, urology specialists, oncologist, hospitals, news media, legislators and community organizations. Collaborative multi-institutional efforts are needed to better understand the biology of RMC. Heightened awareness may potentially enable individuals with the sickle cell trait to better understand the importance of pursuing early diagnostic testing.

What is Renal Medullary Carcinoma?

In 1995, Davis and colleagues reported 34 cases of Renal Medullary Carcinoma at the Armed Forces Institute of Pathology. According to the North American Association of Central Cancer Registries (NAACCR), approximately 240 cases have been reported between 1995 and 2012. There is a strong possibility that the number of cases is lower due to RMC being classified as RCC.

Renal Medullary Carcinoma (RMC) is a rare tumor found within the kidney. It is a highly aggressive and infiltrative malignancy with an almost universally poor outcome, as most of the patients present with metastatic disease at the time of diagnosis. RMC is typically asymptomatic until it is full blown and by that time, the cancer is classified as Stage IV.

The patients often present with the symptoms of gross hematuria (blood in urine), abdominal/flank pain, weight loss or an abdominal mass. The etiology is still not completely understood, however, it occurs almost exclusively in young people with the sickle cell trait. The mean survival rate of RMC is approximately 15 months after diagnosis.

According to the Journal of the National Medical Association, longer survival beyond one year was reported in one patient and up to eight years in one individual whose tumor was well circumscribed and non-metastatic at the time of diagnosis suggesting that early detection could dramatically improve survival

Chris Johnson and his mother

What is Sickle Cell Trait?

Sickle cell trait is an inherited blood disorder that affects approximately 300 million Americans. Where as, majority of the population is African Americans, sickle cell trait can also affect Hispanics, South Asians, Caucasians from Southern Europe and people from Middle Eastern countries. The person with the sickle cell trait carries one normal copy of the hemoglobin A gene (HbA) and one copy of the hemoglobin A gene harboring the genetic mutation found in sickle cell disease (HbS). These individuals do not have sickle cell disease, but can manifest symptoms such as kidney damage over the course of their lives. The other genetic or environmental factors that contribute to the risk of RMC are unknown.

How do you treat Renal Medullary Carcinoma?

An attempt to treat RMC has encompassed radical nephrectomy, chemotherapy and palliative radiation therapy. There is currently limited literature to suggest any true success with these treatment modalities due to the advanced stage of the disease at the time of diagnosis.
It would be appropriate for individuals with the sickle cell trait and persistent or recurrent renal symptoms to have radiological studies (CT Scan) and a comprehensive urinalysis. Heightened awareness and early diagnosis along with advance research could significantly improve outcomes, thus increasing overall survival rate.

Research or Lack Of ?????

This rare cancer is RARELY researched due to lack of funds and limited number of reported cases. At this time, it appears there is not much interest in raising awareness, educating the public, or conducting proactive screening for those individuals with the sickle cell trait who may be at a greater risk for RMC.
We are advocating for a CHANGE.

What Has Been Done
As a result of hard work and determination from several people, The William Guy Forbeck Research Foundation supported our first multidisciplinary focus group in April of this year. Physicians, Scientist and Advocates from across the United States, Europe and the Middle East joined forces to discuss initiatives to increase awareness of RMC and understand the biology of RMC and its correlation with the sickle cell trait.

What is Next?

• It is imperative that everyone is aware of his or her Sickle Cell Status and become empowered to request more extensive testing
• Raise awareness among affected populations about treatment and management options
• Educate primary health care providers about the correlation of RMC and Sickle Cell Trait, as well as establish the management of and develop appropriate standards of care
• Remove obstacles in health care that prevent these patients from receiving expert care
• Initiate a screening protocol for patients that are at risk for RMC
• Create a registry so that health care professionals will be able to collaborate nationally and internationally when treating this disease.

About Chris “CJ” Johnson

In June 2011, Chris, 38 and healthy, became concerned about his health. He had been experiencing severe back pain and also noticed blood in his urine. He presented to the Emergency Center at Houston Methodist Hospital in Sugar Land, Texas for further diagnostic tests. The CT Scan revealed that he had a tumor within his right kidney that looked suspicious for cancer. Consequently, two weeks later, the affected kidney was removed. The results of the biopsy confirmed that Chris had a rare and aggressive cancer called “Renal Medullary Carcinoma (RMC)”. He approached his diagnosis with one thought in mind, “Fight with Faith”.

For 15 months, Chris kept a positive outlook on life and he was determined to beat this beast called “CANCER”. Every day was so different for him, sometimes he was in severe pain and other times he would experience nausea and vomiting or had difficulty breathing. Regardless of the situation, he continued to press through the disease process of the cancer and the side effects of the chemotherapy. He impacted the lives of his family and friends in many different ways. Whether it was cooking a gourmet meal for someone, offering advice or just hanging out…there was a special aura about him that drew people to him.

While receiving treatments at MD Anderson Cancer Center, Chris noticed a lack of advocacy for RMC. He wanted to establish a foundation that would focus on creating awareness of this type of cancer and educate individuals with the sickle cell trait to potentially understand the importance of early diagnostic testing. Additionally, he envisioned a collaborative educational partnership with hospitals, physicians and community organizations. Due to the progression of the cancer, Chris was not able to fulfill his dream of creating his foundation.

During the early morning of September 20, 2012, Chris took his last breath with his mother at his side…he was no longer in pain. The memories of Chris (his smile and laughter) will forever live in our hearts.

Chris continues to live through his legacy, “The Chris “CJ” Johnson Foundation, Inc.”, which was founded by his mother, Ritchie Johnson in April 2013. His dream is now a reality.

The Need For Education on Renal Medullary Carcinoma

Submitted by Ritchie Johnson, MBA, BSN, RN
Mother of Chris Johnson
Founder/President of the Chris “CJ” Johnson Foundation, Inc
July 13, 2016


About the Foundation