NKF’s Voices for Kidney Health: Inspiring Stories of Kidney Advocacy

Removing race from the eGFR and Kidney Donor Risk Index equations, improving coverage for transplant immunosuppressant drugs, and the OPTN modernization initiative𑁋these achievements were only made possible with the help of thousands of Voices for Kidney Health advocates like Precious, Maria, John, and Orlando. 

Learn more about their stories and how to use your voice to make a difference.

Precious McCowan was diagnosed with diabetes as a child. She managed it well until she went to college in 2005. Between classes, work, and activities with friends, caring for her diabetes went on the back burner. By graduation in 2009, her kidney function had taken a toll.

"My blood sugar was out of control, I had high blood pressure, and my kidney function declined," Precious said. "I was introduced to a kidney dietitian and received resources about dialysis. I didn't get the opportunity to hear much about prevention."

Precious' kidneys quickly failed, but she received a pancreas-kidney transplant four months after starting dialysis. She enjoyed the new kidney for a few months before tragedy struck.

"My transplants started to decline four months after the surgery. That same week my two-year-old son had an asthma attack. We gave him treatment and took him to the doctor’s where he passed out. They rushed him to the hospital," Precious said. "I was trying to save my kidney transplant while worrying about my son. Three days later he was declared brain dead due to delayed CPR. My transplant failed days later and I wasn't able to attend his funeral. I thought my life was over."

Once stabilized, Precious returned to in-center hemodialysis until her second transplant in 2015.

"After my second transplant, my long-time friend Derek Forfang, a former National Kidney Foundation chair member and kidney patient advocate, saw my drive to help others. He asked if I'd like to join Voices for Kidney Health," Precious said. "I agreed because I have a passion to help others with kidney disease thrive."

While Precious returned to dialysis in 2023, her passion for helping others has remained strong.

"My success has come from being engaged with individuals in the kidney community and having the opportunity to share my experience," Precious said. "Not many people can say this, but I think I am better because of all that I went through. I'm now fulfilled because I'm helping people by advocating."

Want to make a difference like Precious? Become a Voices for Kidney Health advocate today.

Before 1986, siblings Maria Elena Grijalva and John Arriola didn't know much about kidney disease. That all changed after Maria's kidneys suddenly failed. She received a crash course in all things related to kidney failure and started in-center hemodialysis.

John said, "Dialysis was hard on my sister. I couldn't watch her suffer so I stepped up as a potential living kidney donor. Six months and many tests later, I was accepted as her living donor. Our surgery took place April 15th, 1987. Now I advocate to help all people learn about kidney disease and living donation."

After Maria received her new kidney, she set out to make a difference. She aims to educate her Native American community and those living in California's agricultural communities about kidney health.

"Hispanics and Native Americans don't always get a seat at the table but we're the ones filling up the dialysis centers. That's why I advocate with Voices for Kidney Health. I do it for those who were like me and didn't know they were at risk." said Maria. "I believe in KIDNEY EQUITY FOR ALL™ regardless of color, income, geographic location, title or age. My advocacy for everyone."

Want to join Maria and John in the fight? Sign NKF's Equity Spotlight Petition. 

Orlando Torres' father was diagnosed with kidney failure in 1988. For Orlando, then age 33, this was a wake-up call. He began taking his kidney health more seriously. He visited a nephrologist and was diagnosed with high blood pressure, a risk factor for kidney disease. He has been receiving yearly tests for kidney disease ever since.

All was well until early 2016. Orlando's kidney function declined. By December 2017, he was in kidney failure. Where Orlando lives in Puerto Rico, treatment options are limited. He traveled to a dialysis center for two years before finding a company that helps patients get an at-home dialysis machine. With this new treatment, Orlando's health and energy improved.

In December 2022, Orlando got the call he'd been waiting for–a kidney was available. He rushed to the center, where he successfully received a kidney transplant. During recovery, he researched how to pay this gift forward.

"I chose NKF's Voices for Kidney Health because they provide a complete package of information, research, legislation," Orlando said. "Everyone deserves quality healthcare no matter their education, economic standing, or political and social position. A lot of the Puerto Rican population has diabetes or high blood pressure, top risk factors for kidney disease. I advocate by sharing my experience.”

Home dialysis helped Orlando thrive, but receiving the proper equipment and training took two years. Tell Congress to expand home dialysis so more people can get treatment in the comfort of their own homes. Sign NKF's Home Dialysis Act now.

There are many ways to get involved with Voices for Kidney Health. Whether you prefer signing petitions or visiting D.C. to advocate in person, discover how you can make a difference.