Student-led nonprofit serves people living with Parkinson’s disease
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.
“At that point I was very introverted, and working with an elderly population was a challenge at first,” recalled Desai, a University of Cincinnati third-year student. “However, once I started going, I really found that there were residents who took me under their wing, and I started to feel more at home there.”
Specifically, 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.
Mallika Desai is the founder and president of Parkinson's Together.
“As someone who had always enjoyed science and thought medicine would be something I would consider, this was my first taste of what medicine was like,” Desai said. “I wanted to do something, but I felt helpless in the fact that I was watching my best friend have the worst time of her life. I was there, but I couldn’t do anything besides sit there with her.”
Ruth’s experience with Parkinson’s led Desai to research more about the disease, writing a high school research capstone paper on one potential therapy. She continued to dig into the subject and learn more while in high school, including connecting with Alberto Espay, MD, a UC Parkinson’s clinical researcher and physician.
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.
“It was harder than I thought, especially as she wasn’t my family member,” Desai said. “The fact that I wasn’t able to say goodbye definitely took a toll, but when I got to UC, and knowing Dr. Espay, I felt like I could do something about it in my small way.”
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.
Bringing the mission across disciplines
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.
The organization began in October 2021 with a core group of students who primarily were studying medicine. But as more students from other areas of study joined, new opportunities for different programs emerged.
“We started volunteering and realized that to make a bigger impact, we needed to think beyond medicine or sitting with a resident,” Desai said. “We needed to expand to involve other disciplines.”
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.
If anything gives them hope in this disease, it’s real students they can talk to and connect with.
—Lisa Coors—
PCF co-founder and board president
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.
“What’s unique to us is the student energy and the fact that we want to weave ourselves into the existing Parkinson's community,” Desai said. “The goal is to be truly multidisciplinary and create a welcoming ecosystem for patients in Cincinnati and beyond.”
Vishnu Rajkumar, a third-year medical sciences student and Parkinson’s Together nonprofit vice president, said he especially enjoys working with students from different disciplines that he would probably never interact with professionally otherwise.
"The multidisciplinary work we have evolved to do reinforces the idea to me, and to the people I am working with, that patient care is so much more than just science, but it also requires so many other fields to work,” Rajkumar said. “It brings a sense of community.”
Parkinson's Together students work with members of Parkinson Community Fitness on a memoir project. Photo/Rama Alshami/Parkinson's Together.
Personal connections drive student leaders
Shashank Obulasetti serves as Parkinson's Together secretary.
Parkinson’s Together secretary and UC student Shashank Obulasetti said he initially got involved with the group during his freshman year as a way to meet new friends and get more plugged into campus life.
“I realized that I could be a part of this community to help spread information about the disease and improve the lives of those dealing with it,” said Obulasetti, now a second-year undergraduate. “I started attending more of their meetings and meeting new students, especially upperclassmen, who were able to help me with a lot of the problems I faced my first year at college.”
Obulasetti said he personally dealt with health issues as a child and credits his family doctor with helping him live a healthier life.
“I want to be able to help others the same way she helped me,” he said. “I may not be able to fully understand the challenges the patients face in their daily lives, but I know how much a small amount of help can positively impact them. It is very rewarding and means a lot knowing that I am able to make their daily life a bit easier for them.”
In his role as secretary, Obulasetti is the main point of contact between Parkinson’s Together and other community organizations, patients and other partners. A neuroscience major, he said his involvement has helped him grow in his academic career as well.
“My experience with Parkinson's Together has been very fulfilling, and I have learned many things,” he said. “Everyone on the executive board works really hard for the organization. They make you want to work even harder, which helped me change my mindset from ‘I will do it tomorrow’ to ‘I will finish it now.’ This atmosphere that they created helped me get things done in my academic life.”
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.
—kim seroogy—
UC Parkinson's researcher
‘Unparalleled student engagement’
In February, Parkinson’s Together hosted its second annual research symposium where patients and caregivers heard firsthand from researchers, doctors, representatives from the 1819 Innovation Hub Learning Lab and community organizations. Attendees learned about advances in research, took part in mindfulness activities, worked on a mini-innovation challenge and had a chance to interact directly with experts and advocates in the local Parkinson’s community.
“The first step that we felt like we could do without trying to reinvent the whole system, but trying to bring something important and needed, was [establish] a place where patients could see all of the resources that we knew about in Cincinnati and interact with them,” Desai said of the idea for the symposium.
Representatives from the Cincinnati Ballet and Parkinson Community Fitness (PCF), a Cincinnati-area nonprofit organization for those with Parkinson’s and their families to go for exercise, support and social events, got symposium participants’ heart rates up during interactive exercise and dance sessions.
Parkinson's Together nonprofit officers, top row, from left, Niyati Kanchan, Shashank Obulasetti, Ian Barnhill, Vishnu Rajkumar and Chloe Sabile, bottom row, from left, Rama Alshami, Hanna Sausaman, Mallika Desai and Kara Beebe. Not pictured: Kemi Akinefron and Minahil Haroon.
Parkinson’s Together representatives regularly volunteer at PCF. “When we bring the students to our facility, the members see hope,” said Lisa Coors, PCF co-founder and board president.
“Our members see the future of this disease and that there are going to be future physicians and researchers in Parkinson’s. If anything gives them hope in this disease, it’s real students they can talk to and connect with. It’s been great.”
Community member Martha Hicks-Robinson first met Parkinson’s Together students while exercising at PCF and attended this year’s symposium with her partner. After being diagnosed with Parkinson’s disease a few years ago, she said she likes to get as much information as possible.
“If I'm going to get into something, I’m going all in,” she said. “I have the realization that it probably is not going to benefit me, but if it will benefit the next generation, then it’s definitely worthwhile if we can prevent Parkinson’s from occurring to anybody else.”
Hicks-Robinson said the symposium provided a good blend of more rigorous academic information with physical activity and more lighthearted sessions, helping attendees stay engaged.
Student members of Parkinson's Together regularly volunteer at Parkinson Community fitness. Photo/Rama Alshami/Parkinson's Together.
“The [UC] students have been great. They’re so interested and they just really want to know you as a person,” she said. “They’re really engaged and this is going to be something they want to work with and understand it from a different perspective than just as a student.”
Kim Seroogy, PhD, a Parkinson’s basic science researcher at UC, has presented both years at the research symposium and said it is clear the students have genuine care and passion for people 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.”
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.
—Mallika Desai—
Parkinson's Together founder
UC students’ model sets stage for national impact
Professor Espay said he has been proud to mentor Desai and participate in the symposium and praised the organization’s work to be a relevant and useful resource for patients.
“This organization is covering areas that are usually left unaddressed during appointments, helping patients link with local resources and with like-minded people,” said Espay, the James J. and Joan A. Gardner Family Center for Parkinson’s Disease Research Endowed Chair in UC’s Department of Neurology and Rehabilitation Medicine. “If future doctors will begin their career in the manner that Mallika and her colleagues have, our patients can look forward to having kind, caring, holistic physicians at their disposal.”
Desai is currently a third-year undergraduate student studying medical sciences, with direct admission to medical school at UC. In addition to interest in specialties including neurology, cardiology and neurosurgery, she said her work with Parkinson’s Together has helped her develop a passion for innovation, leading her to become a UC NEXT Innovation Scholar.
“I realized I really like creating and building things that directly impact patients, and that’s what led me to the NEXT Innovation Scholars program where I work with a broader definition of innovation,” she said. “We work with companies to build and come up with something they need help with, and it’s interesting because that’s also multidisciplinary.”
Parkinson’s Together has grown to include more than 200 students involved in some way at UC. The organization is continuing to grow while maintaining its mission to support members of the Parkinson’s community, like Ruth and Martha, 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.”
Impact Lives Here
The University of Cincinnati is leading public urban universities into a new era of innovation and impact. Our faculty, staff and students are saving lives, changing outcomes and bending the future in our city's direction. Next Lives Here.
Photos: Andrew Higley, unless otherwise noted
Digital design: Kerry Overstake
UC Marketing + Communications
1
UC COVID-19 studies awarded $425K
April 15, 2020
Understanding that time was of the essence in combating this highly infectious disease, UC and its College of Medicine’s Office of Research conducted a rapid review and distribution of $425,000 in novel pilot grants to researchers, focusing on eradicating the disease.
2
Educational breast cancer event focuses on empowerment
Event: November 3, 2018 9:00 AM
"Beyond Breast Cancer: The Path to Empowerment” is an educational event for breast cancer survivors, their families and the community; it will be held from 9 a.m. to 3 p.m. Saturday, Nov. 3, at the Kingsgate Marriott Conference Center, 151 Goodman Drive.
3
Yahoo News: Five Black UC faculty members receive National...
September 8, 2020
Five African-American researchers and healthcare professionals on UC’s medical campus have received sizable grants from the National Institutes of Health during the past 18 months. The faculty members were interviewed by WCPO to help showcase innovation and the diverse voices and perspectives they bring as the healthcare community attempts to ease health disparities in communities of color in Cincinnati and beyond.
