Vinay Kamath, 15, Wants More Vasculitis Research So He Started a Fundraiser
When Vinay Kamath, 15, found out his grandmother had ANCA negative vasculitis with kidney involvement, the first thing he did was research the disease and treatment.
He quickly discovered the Vasculitis Foundation (VF) and read about avacopan, (Tavneos®), the medicine his grandmother had been prescribed. Vinay wanted to explore studies on other medications, but soon learned there weren’t a lot of treatment options for her particular form of vasculitis. That’s when he decided he wanted to see more research into vasculitis and medications. He hopes one day there will be a cure for the disease.
Vinay started a fundraiser – the first he’s ever done – to raise awareness and funding for vasculitis research. So far, the high school freshman has raised more than $1,800. His goal was $2,000, but he doesn’t plan to stop there.
Through donations, the VF funds research and fellowships. The VF Young Investigator Program awards grants of $25,000 a year per study for up to two years. The VF’s Fellowship Program is a mentored training program providing funding of up to two years for physician-investigators who have a strong interest in vasculitis and wish to pursue a period of specialized training.
Vinay, a freshman at Syosset High School on Long Island, New York, created a QR code that would send the donations directly to the VF. He put the QR code on a flyer and posted it at his local hospital, a nearby clinic, the public library near his home and at several businesses, including ones in Queens where his grandparents live. He also sent a digital version of the flyer to friends and relatives.
“This is the first fundraiser I’ve done,” Vinay said. “I just wanted to help people like my beloved grandmother. I had the goal and I wanted to achieve that goal. Now, I want to keep the fundraiser going to raise as much as I can.” 
He feels an urgency to help increase research efforts right away. His 72-year-old grandmother, Vasumathi Pai, had been very healthy.
“It was a sudden diagnosis,” he said. “Now her kidney is severely damaged. I found the VF online. I wanted to find out how I could support research.”
The good news is that since starting avacopan, his grandmother is feeling better. The family plans to celebrate her 73rd birthday together in what Vinay describes as a “healthier celebration.”
In the meantime, Vinay is not just fundraising, he is taking his usual high school classes, along with an introductory class to science research.
“By learning research skills, you can communicate with other researchers,” he said. “I would love to do more research as it is interesting to me. I want to help people like my grandmother. I don’t want there to be just one study. I want to see broader research in rare diseases.“
