In 2002, Nicole Harr was diagnosed with polycystic kidney disease, or PKD, the same illness that had caused her father's health to steadily decline until he died of a heart attack.
She was 35 with two small children and, at the time, there was no treatment.
"I immediately thought that my journey with this disease would be exactly like my dad's," Harr said. "And that was incredibly frightening."
But Harr had one thing working in her favor: she lived in Kansas City, the home of the PKD Foundation.
With the help of the foundation, Harr entered a clinical trial for a drug to delay the progression of PKD. That drug, tolvaptan, was approved for commercial use by the U.S. Food and Drug Administration in April under the brand name Jynarque. It's now available to the 12 million people around the world who have PKD, including an estimated 600,000 in the United States.
People with PKD often end up in renal failure, on kidney dialysis and waiting for a transplant.
Jynarque, which carries a risk of serious liver injury, is the first treatment that can delay that decline. Its approval will be cause for celebration when about 400 people gather in Kansas City this weekend for a conference the foundation hosts every two years.
It's also a Kansas City success story, that started with a short article buried on page 44A of The Star's Sunday edition on Feb. 15, 1981.
Medical writer Kathleen Fisher had interviewed University of Kansas Medical Center researcher Jared Grantham, who told her he was one of only about a half-dozen doctors in the world researching PKD. The lack of attention to the illness troubled him.
PKD was frequently misdiagnosed, Grantham said, and those who have it have a 50 percent chance of passing it on to their children.
Kansas City businessman Joseph Bruening read Fisher's article and months later sent a letter to Grantham. Bruening said his wife had PKD, and he wanted to help.
"There is a possibility that we may have funds to contribute towards research on polycystic kidneys," Bruening wrote. "I wish to have your suggestions as to the most effective use of such money and a general idea of the amount needed to create a chance for an effective result."
In August 1982, Bruening and Grantham co-founded the PKD Foundation. Since then, the foundation has spent more than $40 million on research, nephrology fellowships and scientific meetings, becoming the largest non-governmental source of PKD research money.
But their foundation lives on.
Harr and her family didn't know about it when they moved to Kansas City in 1998. But they found out pretty quickly after she was diagnosed with PKD.
"We just felt incredibly lucky to be right here, where we have this organization," said Harr, who is now the foundation's director of community engagement.
Sara Bristow, whose mother has PKD, said it was "a happy accident" that her family settled near the foundation in Kansas City after many moves related to her father's military service.
Bristow's mom participated in the Jynarque trial and it helped her stay relatively healthy, even as a 60-year-old who was diagnosed with PKD in 1987.
"For her it's been working really well," said Bristow, who also works at the foundation. "It's not going to help every patient, but it has helped her and she's really grateful for that."
The foundation funded the early stages of research on Jynarque and guided PKD patients into the clinical trials.
It took more than a decade for the drug to gain full approval, which is not unusual for the FDA process. The final stages of development came after a Japanese drugmaker, Otsuka Pharmaceuticals, bought it and scaled it up for commercial use.
Alexis Denny, the PKD Foundation's director of government affairs, thanked Otsuka for its "steadfast support" in a written statement.
“This was an unpaved road," Denny said in a statement. "Otsuka really cleared the path for more treatments on the horizon."
Harr started on the clinical trial in 2006. It was still in its early stages at the time and neither she nor the researchers knew whether she got the drug or a placebo. But once it progressed past that "double-blind" stage, she knew she was on the medication and believed it helped her live a normal life longer.
Still, Harr said her kidney function has dipped in recent years and it may not be long before she needs dialysis.
But she's grateful for any amount of healthy time the drug bought her and grateful that if her children end up with PKD someday, they will have options she didn't have.
Her only regret is that Grantham didn't live to see Jynarque approved.
"He was one of the most amazing men I've ever met," Harr said. "He was kind and truly a champion for PKD patients and their families. He really worked tirelessly to keep the research moving."