Niki Garvie uses Miss Freedom USA Woman platform to raise awareness about organ donation, PKD

When Niki Garvie's daughters were diagnosed with polycystic kidney disease, she was determined to learn all she could about the disorder. That determination led her to pursue a new career. Today, she's a nurse, pageant queen and tireless advocate for the PKD community.

For some women, being crowned a pageant queen would be a dream come true.

Niki Garvie can confirm that it does feel pretty good.

But for Garvie, who was crowned Miss Freedom USA Woman in July 2023, a bigger dream came true a couple of years earlier, when she became a transplant nurse at Mayo Clinic in Florida.

Garvie's daughters Jayden Terry, Brooks Garvie and Noel Garvie. Brooks and Noel have PKD.

Both dreams were fueled by personal passions: to make a difference for those who need organ transplants, and to raise awareness about polycystic kidney disease, a condition that affects two of Garvie's three daughters and eventually leads to kidney failure.

"There are over 103,000 people on the transplant waiting list," Garvie says. "More than 85% of them are waiting for kidneys."

With her new platform, Garvie is doubling down on raising awareness about the need for organ donation and being a tireless advocate for the PKD community.

Tapping into personal motivation

When Garvie's daughters and her ex-husband were diagnosed with polycystic kidney disease, she knew next to nothing about the condition.

"The more I learned, the more I realized this would be a lifelong struggle for them," she says.

At the time, there was little care available locally, so Garvie sought care for her daughters in Washington, D.C.

She also sought a new career.

"My daughters were diagnosed in 2017, and I started nursing school in 2018," Garvie says. "I wanted to learn more about their disease."

After graduating from nursing school in 2020, Garvie got her "dream job" as a transplant nurse at Mayo Clinic.

Then another dream came true: Mayo Clinic in Florida was named a PKD Foundation Center of Excellence, and Garvie's daughters were able to receive care locally.

Like Garvie, their physician, Fouad Chebib, M.D., was inspired to pursue his career by a family member's diagnosis. When Dr. Chebib was 16, his father revealed that he had polycystic kidney disease. Dr. Chebib immediately began researching the disease.

"I learned that Mayo Clinic is the best place to be for polycystic kidney disease," he tells Inside Mayo Clinic Research. "I decided right then that I'm going to cure this disease. I'm going to become a PKD nephrologist at Mayo Clinic.

"My father was my inspiration to be in this field," Dr. Chebib says. "He gave me a passion that drives me to make sure that no one would suffer from polycystic kidney disease, as he did."

Garvie shares that goal.

Raising awareness

Garvie says she's determined to help raise awareness and funds to eventually find a cure for polycystic kidney disease, and recently became the ambassador (aka, president) of the Jacksonville chapter of the PKD Foundation.

"We work to raise awareness and funds and help families connect with resources," Garvie says.

She's also a Donate Life ambassador.

"I believe that it is a fundamental human responsibility to register as an organ donor," Garvie says.

That's one of the messages she shares through her platform as Miss Freedom USA Woman.

"I'm always looking to talk to more people about these issues," she says.

Her reign will end this summer, but she says her dedication to advancing the causes she cares about never will. And she has two beautiful reminders that motivate her to speak out more than any crown ever could.

For the past year, she's been able to see one of those reminders at work. Garvie's daughter Noel Garvie followed in her mother's footsteps and is now a nurse at Mayo Clinic in Florida. They've even shared a patient.

"Noel once cared for a patient I see routinely in our clinic," says Garvie, now a nurse in the Medallion Program. "Every time he sees me, he asks how she is and retells the story of how she was the ray of sunshine in a hopeless time."

Thanks in part to Garvie's advocacy, that's a light that will be shining brightly for a long time.