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Championing best practices in patient advocacy and education

As an NBA Champion and Olympic gold medalist, retired professional basketball player Alonzo Mourning recognizes the potential his high profile has to inspire others.

At the height of his basketball career, Mr. Mourning was diagnosed with focal segmental glomerulosclerosis (FSGS), a rare and incurable genetic kidney disease with the potential to derail his career and curtail his life. He underwent a life-saving kidney transplant in 2003, returned to professional basketball, and was inducted into the Hall of Fame in 2014.

In his plenary address at WCN’22, Mr. Mourning will recount the story of how he overcame the challenges of his disease to return to play basketball for the NBA.

Celebrating 18 years of post-transplant life this month, he wants to educate and inspire others not only to get tested, but to advocate for their own health. He says: “I made a living from my body, and I understood the importance of changing my lifestyle to give my body the best chance to continue to thrive after the transplant.

“Since my diagnosis in September of 2000, I have realized that many different types of kidney disease can be prevented with proper diet and exercise. It’s important that people from all different backgrounds understand the warning signs of kidney disease and that we teach individuals how to prevent kidney disease by staying healthy. I am passionate about helping people take ownership of their health, look at their diet, and make positive changes to their lifestyle.”

Mr. Mourning will argue that it is vital to consider the patient perspective in kidney research and would like to see more focus on proactive prevention and education in African American communities where the risk of kidney disease is much higher.

“The disease I suffered from targets the African American communities. These are the same communities where people do not go to the doctor regularly, either due to lack of access to proper healthcare or fear of medical settings.

“I was blessed that I had access to some of the best nephrologists in the world. But not everyone has that, and it needs to be a priority to educate individuals in high-risk demographics on the warning signs of kidney disease as well as the importance of being tested.”

He feels we need a more holistic approach to strengthening low-income communities. For these demographic groups at a higher risk, accessibility to testing is also vital.

“Most people who suffer from kidney disease don’t even know they have it. We need to educate the public on the importance of early detection. If we can encourage people to get an annual check-up, then simple blood tests can pick up markers like diabetes and hypertension and catch more cases of kidney disease.”

Through his advocacy and education efforts, Mr. Mourning has raised more than $50 million for various programs. He works tirelessly to help those with kidney disease and is optimistic about their future.

“There are advancements every day toward new treatments, but it’s vital they are developed in partnership with patients and made available to all who need them.”

Alonzo Mourning: “Advocacy for (Kidney) Disease: Patient View and How to Get Results”, Presidential Address and Plenary Session, Friday 25 February, 20:00 – 21:15 hrs Kuala Lumpur (Malaysia) time:!sessiondetails/0000015700_0


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