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

In 1995, Davis and colleagues reported 34 cases of Renal Medullary Carcinoma at the Armed Forces Institute of Pathology.

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Renal Medullary Carcinoma & Sickle Cell Trait : The Need For Education And More Research

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.

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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

Renal Medullary Carcinoma & Sickle Cell Trait : The Need For Education And More Research

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.

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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”.

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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


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Unheard Voices Magazine is a news reporting platform covered under Copyright Disclaimer Under Section 107 of the Copyright Act 1976, allowance is made for "fair use" for purposes such as criticism, comment, news reporting, teaching, scholarship, and research.

Unheard Voices is an award-winning news magazine that started in 2004 as a local Black newsletter in the Asbury Park, Neptune, and Long Branch, NJ areas to now broaden into a recognized Black online media outlet. They are the recipient of the NAACP Unsung Hero Award and CV Magazine's Innovator Award for Best Social Justice Communications Company.

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Health & Wellness

Amber Nicole Thurman died from delayed care due to Georgia’s abortion laws, says family

Thurman died after waiting 20 hours in pain for a hospital to treat a rare complication from taking an abortion pill, she had to obtain in North Carolina.

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Amber Nicole Thurman
Amber Nicole Thurman (Photo Source: GoFundMe)

Amber Nicole Thurman was a vibrant, healthy 28-year-old Georgia woman who tragically died due to abortion laws and medical neglect, her family says.

Amber Nicole Thurman’s life could have been preventable

According to reports, Thurman died after waiting 20 hours in pain for a hospital to treat a rare complication from taking an abortion pill that she had to obtain in North Carolina. She needed a routine procedure, a dilation and curettage (D&C), to clear residual tissue from her uterus.

Did abortion laws cause problems for the mother?

But she reportedly couldn’t get the help she needed. New abortion laws in Georgia made conducting this essential medical procedure a felony unless in an emergency situation.

Georgia’s LIFE Act took effect after the U.S. Supreme Court overturned Roe vs. Wade in 2022 and banned abortions after a fetal heartbeat can be detected, effectively prohibiting abortions beyond around six weeks of pregnancy, and criminalized performing one with limited exceptions.

Thurman had sought help at a local hospital in Stockbridge, Georgia. Even as Thurman developed sepsis, her family says doctors at the hospital did not evacuate the remaining fetal tissue in her uterus with the (D&C). Unfortunately, she later died on the operating table, reports ProPublica.

After Thurman’s death, a Fulton County Superior Court judge struck down the law, stating the law violates Georgia’s Constitution, reports NewsWeek.

ProPublica reported that Georgia’s maternal mortality committee also found that Thurman’s death was completely preventable. When her family learned this, they were devastated once again and their grief intensified affirming that Amber should not have died.

GoFundMe

As Thurman’s family struggles to cope with their grief and anger, they are striving to care for Amber’s son the way she wanted and have started a GoFundMe.

“The funds through this site will support Amber’s son for his immediate needs and for his future. This includes mental health and grief counseling for him and Amber’s family,” the GoFundMe reads.

According to the family, the funds will also support the family’s fight for justice for Amber and women’s rights over their own bodies.

“Amber was a devoted mother to her 6-year-old son and had dreams of becoming a nurse while she worked as a medical assistant. Amber hoped to provide a bright future for herself and her son, but that was stolen from her, and we cannot stand by as this happens to more women.”

Visit the GoFundMe to donate and for more information.


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Health & Wellness

7 myths about Prostate Cancer debunked by #BlackProstateCheckChallenge

In honor of Prostate Awareness Month, the #BlackProstateCheckChallenge initiative has created 7 myths about the afflicting disease. 

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prostate cancer myths
Photo by Tima Miroshnichenko: https://www.pexels.com/photo/a-man-with-stethoscope-around-neck-covering-mouth-with-his-hand-5452255/

September is Prostate Cancer Awareness Month, and just like any other diseases, there are myths about this one.

Stats

According to Zero Prostate, Black and African American men are much more likely to develop prostate cancer. One in six Black men will develop prostate cancer in his lifetime—compared to one in eight men overall. Black men are 1.7 times more likely to be diagnosed with—and 2.1 times more likely to die from—prostate cancer than white men.

Prostate Cancer awareness challenge

Civil Rights icon Charles D. Neblett, PhD.’s family nonprofit organization Community Projects, Inc. has created a new initiative, the #BlackProstateCheckChallenge, asking Black prostate cancer survivors and patients to post their journeys using the hashtag simply.

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The purpose of the initiative is to open dialogue, overcome stigmas and fears, capture snapshots of experiences, and share information and resources to reveal the complex issues of health equity concerns among Black men.

In honor of Prostate Awareness Month, the #BlackProstateCheckChallenge initiative has created 7 myths about the afflicting disease.

Check out the 7 myths about prostate cancer debunked by #BlackProstateCheckChallenge

  1. Black men get prostate cancer just like every other race. No. According to the American Cancer Society, the prevalence of prostate cancer is greater in Black males, affecting one out of every six, compared to one out of every eight white men. In addition, black men experience a greater mortality rate from prostate cancer, which is twice as high as that of white men. White men have historically enjoyed the privilege of receiving cancer treatments, which accounts for the difference in mortality rates. A recent Keck School of Medicine of USC study found nine previously undiscovered genetic variants that increase the risk of prostate cancer in men of African ancestry, with seven of these variants being found mostly or exclusively in Black men.
  2. “I don’t have prostate cancer if I have no symptoms.” No. Black men are being diagnosed in later stages and with more specific aggressive prostate cancer. Sexual partners are key supporters to encourage men to notice symptoms like more frequent trips to restroom in middle of the night or a difference is sexual performance. By the time Black men notice symptoms, they could be in a later stage than white men. If a Black man has a grandfather or father who has prostate cancer, they should be getting a DRE exam by age 35-38 because they are now at risk.
  3. Every hospital lab has the same standard imaging equipment. No. You should ask what year your radiation machine was built. 30% of men getting radiated for prostate cancer are treated with older, lower energy machines. Patients should work with their doctor to stay on top of their imaging as well as their PSA test results.
  4. “There is one best way to treat prostate cancer.” No, a patient and a doctor should have “shared decision-making.” You should have an open, trusted relationship to decide the route that’s the best individualized for you based on your genetics, health history, age, stage, and lifestyle. Every prostate cancer patient should have access to a nutritionist.
  5. “Every male should get screening as soon as possible.” No. Black men have the highest false-positive results. There have not been enough Black men studied in clinical trials to support that early screening prevents prostate cancer.
  6. “Prayer and spirituality can’t help cancer.” Cancer can help patients to focus on what truly matters, and prompt us to live with a heightened consciousness of our ultimate priorities. The current data suggests that added stress or trauma can contribute to more aggressive cancer.
  7. Cancer care is covered by Medicare.” No. The average cost of Stage 4 prostate cancer is more than $93,000 annually, according to the American Cancer Society. The Medicare for All Act was introduced in Senate (05/17/2023). It would establish a national health insurance program that is administered by the Department of Health and Human Services. It has not passed.
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Health & Wellness

New survey reveals 43% of Black Gen Z singles are practicing celibacy

Celibacy Gains Momentum as Young Black Singles Seek Emotional Well-Being and Healthier Relationships Amidst Changing Dating Culture

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Black Gen Z celibacy
Photo by Andres Ayrton: https://www.pexels.com/photo/beloved-african-american-couple-cuddling-and-smiling-on-couch-6579051/

A recent survey conducted by BLK, the leading dating app for Black singles, has uncovered a significant trend among Black Gen Z daters—43% are currently practicing celibacy.

Black Gen Z celibacy

Among Black Gen Z women, the number is even higher, with 64% embracing this lifestyle choice. Interestingly, most of these women are new to celibacy, with 63% having adopted it in the past six months.

This shift reflects a growing focus on personal development and mental well-being among young Black daters. The survey found that the top reasons for choosing celibacy include personal growth and self-discovery (61%), as well as frustration with toxic dating culture.

Key Survey Findings:

  • 43% of Black Gen Z daters are practicing celibacy.
  • 64% of Black Gen Z women are celibate, with 63% having been celibate for less than six months.
  • 61% cited personal growth or self-discovery as their primary reason for celibacy.
  • 66% reported improved mental and emotional well-being due to celibacy.
  • 87% said celibacy has either positively impacted their dating life or made no difference.
  • 1 in 3 Black Gen Z daters believe celibacy is becoming more accepted, though 43% still feel there’s a stigma within the Black community.

Celibacy and Mental Health: A Positive Impact

Celibacy isn’t just about abstaining from physical intimacy; it’s become a means of emotional and mental self-care for many Gen Z daters. The survey revealed that 66% of respondents reported significant improvements in their mental and emotional well-being since becoming celibate. By focusing on their inner growth and avoiding the stress of toxic dating environments, young Black singles are finding greater peace and clarity.

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Contrary to concerns that celibacy might hinder dating success, 87% of those surveyed said it has either positively impacted their dating life or made no difference at all. In fact, many Black Gen Z daters prefer to discuss celibacy early in a relationship, creating transparency and fostering deeper connections.

Navigating Stigma: The Evolving Perception of Celibacy in the Black Community

While celibacy is becoming more accepted among Black Gen Z, with 1 in 3 feeling that it’s gaining acceptance, 43% believe that stigma or misunderstanding still exists within the broader Black community. These individuals are redefining what it means to date and thrive in relationships, challenging outdated societal norms in the process.

Jonathan Kirkland, Head of Brand and Marketing at BLK, highlights this cultural shift: “What we’re seeing with Black Gen Z singles is more than just a dating trend—it’s a movement towards personal empowerment and emotional well-being. This generation values authenticity and is reclaiming their narratives, prioritizing self-discovery over societal expectations. The rise in celibacy speaks to their desire for healthier relationships, both with themselves and others, and that’s a powerful statement.”

As more Black Gen Z daters follow this path, celibacy is emerging as a growing cultural trend, not just for dating but as a broader statement about self-worth, mental health, and emotional well-being.

See also  4 Ways Social Media Affects Teens Mental Health

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