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Young Hoosier living with rare kidney disease hopes to inspire others

'This is going to be the gift that keeps giving. Beyond their life spans. Theirs and mine.'
CureGN
Posted at 7:50 PM, Oct 28, 2021

INDIANAPOLIS — It's the gift that keeps giving. At Riley Hospital for Children, one of those gifts comes in the form of research.

“It’s been a long, crazy ride,” Grace Rosser said. Her journey started in middle school.

At home, dialysis takes up three hours of Rosser’s night, multiple times a week. It’s been the 20-year-old’s normal routine for the last three years.

“I feel like I got the crappiest hand dealt to me, ever, but it’s not the end of the world. I’m still here,” Rosser said.

At 13, Rosser was diagnosed with a rare kidney disease called Focal Segmental Glomerulosclerosis or FSGS.

It was not long before she came to Riley and started seeing a pediatric nephrologist, Dr. Myda Khalid. The two see each other — even now — at least once a year.

Rosser drives in from Chesterton, Indiana and it is because of a unique study involving kids and adults called, “CureGN.”

“Such a study cohort has not existed before," Khalid said. "This is one of a kind and much needed."

Around 2,500 participants are enrolled, including Rosser since her diagnosis at 13. She is one of 25 patients at Riley, which is one of the leading centers to enroll pediatric patients.

“How amazing that a girl at 13 could see this and agree to be a part of something like this. I said that is bigger than all of us here and probably bigger than our lifetimes,” Rosser said.

CureGN started eight years ago. The study is looking to improve treatment, diagnosis, and finding cures for those living with rare kidney diseases. Although the research may not directly impact Rosser’s treatment, the hope is it helps others by answering questions and spawns other research studies.

“If I know that I can contribute positively to people all around, what’s the harm?” Rosser said.

Participating in research is something Rosser encourages others to do.

“You don’t necessarily have to be sick or have an illness to help and better other people,” Rosser said.

The study, Khalid said, is more than just labs. It is also an unmatched support system.

The team sees their patients like family, and patients feel the same way.

And, there's good news for Rosser. She is set to get a kidney transplant at the beginning of 2022. This means no more dialysis and returning to a more normal life.

The transplant marks the start of a new chapter, but it's one Rosser said will always include CureGN.

“If I can help anybody, in any way to not have to go through what I went through, why wouldn’t I?” Rosser said.