Student-founded nonprofit revolutionizes Parkinson’s care

By Tim Tedeschi
UC Public Information Officer

When University of Cincinnati student Mallika Desai was in middle school, she began volunteering at a retirement home after her parents encouraged her to get more involved in her Miamisburg, Ohio, community.

Desai connected with one resident, Ruth, who was outgoing, boisterous and lit up every room she walked into. But as Desai continued to open up and connect with the residents, Ruth started to isolate herself, frustrated as symptoms of Parkinson’s disease affected her daily routines.

The COVID-19 pandemic prevented Desai from continuing to volunteer at the retirement home, and Ruth died during the COVID-19 pandemic around the conclusion of Desai’s senior year of high school. 

Inspired by Ruth’s memory, Desai founded Parkinson’s Together, a nonprofit, student-run organization that takes a multidisciplinary approach to meeting the needs of people living with Parkinson’s disease. 

When she got to UC and began meeting other students on campus, Desai found many of them also had personal connections to Parkinson’s disease and wanted to help patients any way they could. The group set out to complement programs that other community organizations already had in place, filling gaps in the current Parkinson’s environment in Cincinnati.

“We knew that we could create this network of all the existing resources that are out there right now, and we wanted to build on it,” Desai said.

With this collaborative approach, pre-law undergraduate students can research and educate patients on inequities and their legal rights regarding the link between exposure to pesticides and the development of Parkinson’s disease. Pre-medical students are conducting research on topics including how telemedicine and exercise can help manage the disease and improve quality of life.

Engineering students participated in a hackathon this spring to design solutions that optimize patients’ living space and routines that have been altered due to the disease. Political science majors can study and increase advocacy to local, state and federal government officials promoting policies that improve the lives of patients with Parkinson’s.

“I don’t think I have come across a more organized and committed student-run organization in my 30-plus years of Parkinson’s research, especially undergraduate students,” said Seroogy, professor emeritus and director of the Selma Schottenstein Harris Lab for Research in Parkinson’s in the Department of Neurology and Rehabilitation Medicine at UC’s College of Medicine. “They demonstrate unparalleled student engagement with the local Parkinson’s community, and they want to make a difference.”

Parkinson’s Together has grown to include more than 200 students involved in some way at UC. The organization is continuing to grow while keeping its mission to support members of the Parkinson’s community, like Ruth, nationwide.

Using a “wheel and spokes” model, Desai said the nonprofit will continue to operate its hub in Cincinnati as students launch chapters at other universities. Students at Miami University in Oxford, Ohio, and Washington University in St. Louis are beginning to work in their communities, and the goal is to have at least five active chapters at universities across the country within the next two years.

“There are so many things unique and beautiful about Cincinnati, but what’s not unique is that there are students across the country who want to help,” Desai said. “We are trying to connect them to the vehicles that can help patients.”