Category: Philanthropy

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Philanthropy in Motion: Strength in Science

Momentum: Philanthropy in Motion is a collection of stories highlighting how philanthropy is driving progress and innovation all across our campus. It鈥檚 a celebration of those who believe in a better world 鈥 and who choose to invest in making it real.

 

It was Bob Lyons鈥 birthday, just two years after he had retired from his faculty position at 91原创, and he was sitting in a neurologist鈥檚 office, trying to process what he鈥檇 just heard. He could only wonder, 鈥淲hat鈥檚 going on?鈥

Lyons had Parkinson鈥檚 disease.

Parkinson鈥檚, often called PD, is a neurodegenerative disease in which brain cells that produce dopamine are damaged or die. PD affects motor and non-motor systems, resulting in symptoms including tremors, balance problems, slowed movements, depression, loss of smell and more. While the disease isn鈥檛 fatal, it results in a diminished quality of life, and there鈥檚 currently no cure.

Once the initial shock had worn off, Lyons spent some time stewing over it and trying to rationalize it away. (Days he didn鈥檛 have any symptoms meant he didn鈥檛 really have Parkinson鈥檚, right?) 

He confided his diagnosis to a handful of people, including former colleague Dan Sarkissian, associate vice president of development. Sarkissian told Lyons about the Parkinson鈥檚 research happening at 91原创, and, as a former professor in 91原创鈥檚 Department of Plant and Soil Sciences, he was intrigued and eager to get involved.

鈥淏efore I retired, I conducted research with graduate students at several universities,鈥 Lyons said. 鈥淗owever, now I was no longer a principal investigator. Instead, I was a research participant from an entirely different vantage point, which I found to be fascinating and eye opening. It鈥檚 truly a bonus getting to know the faculty, staff and grad students involved in this PD research, and I felt honored to be included. They are all top notch!鈥

One of those people is Associate Professor of Kinesiology and Applied Physiology Chris Knight, co-director of the  at 91原创. Knight鈥檚 work investigates how the nervous system controls powerful muscle contractions and fast movements, as well as how they鈥檙e affected by Parkinson鈥檚, aging and exercise.

One of Knight鈥檚 ongoing projects is an experimental exercise program called Speed Geezer. Participants engage in high intensity interval training on stationary recumbent bicycles for 30 minutes twice a week, alternating between bursts of intense pedaling and brief recovery periods. 

Speed Geezer has been a hit: there鈥檚 a sense of camaraderie among patients and researchers, it鈥檚 a great way to exercise and alleviate PD symptoms, there鈥檚 minimal fall risk and participants鈥 mobility tends to improve or not decline over time. For countless Parkinson鈥檚 patients and older adults throughout the Delaware Valley, the program is life changing.

If it weren鈥檛 for a generous donation from 91原创 alumna Jodi Cianci, AS88, and her husband, Chris Cianci, Knight鈥檚 research might not have focused on PD at all, though.

In 2011, Jodi Cianci was diagnosed with Parkinson鈥檚, and she and her husband were eager to find ways to manage the effects without using traditional medications. After reading a study from the Cleveland Clinic that concluded pedaling a bicycle multiple times a week could help reduce symptoms, Jodi Cianci started taking spin classes. Less than two months later, Chris Cianci saw noticeable improvement in his wife鈥檚 fine motor skills.

The Ciancis later founded , a nonprofit that advocates for the importance of PD patients exercising. The couple was excited when they heard about Knight鈥檚 interest in exercise therapy for Parkinson鈥檚 and arranged a time to meet him. At the end of their first visit, the Ciancis gave Knight a check, already convinced his budding research would be invaluable. 

鈥淎t the time, I was wondering if I could handle a research agenda that involved a population with such complexity because no two people with Parkinson鈥檚 disease are the same,鈥 Knight said. 鈥淚 was concerned because I didn鈥檛 think our environment could handle not just the size of the clinical population, but also exercise intervention studies, which are very intensive in time, resources and expertise. When Jodi and Chris shared their story, that鈥檚 when I made up my mind that we would take the risk and see where this goes. I wouldn鈥檛 be doing Parkinson鈥檚-related research today if it wasn鈥檛 for their support.鈥

For more than a decade, Shake It Off has helped fund research projects, graduate students in Knight鈥檚 lab and data collection from patients outside of Newark. The Ciancis鈥 support has also allowed Knight to continue to develop innovative initiatives like Speed Geezer.

鈥淒r. Knight has made tremendous strides,鈥 said Jodi Cianci. 鈥淥ver the years, I鈥檝e adjusted my workout routine based on his research. His findings give hope to Parkinson鈥檚 patients for better quality of life.鈥

As Knight鈥檚 work has grown, so, too, has support. The power of collective giving from individuals and families affected by Parkinson鈥檚 have helped Knight further delve into areas that are not often researched. 

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INNOVATING TREATMENTS

Developing more effective treatments for Parkinson鈥檚 requires a deeper understanding of how the condition affects the brain. Just ask听Roxana Burciu, the co-director of 91原创鈥檚 Motor Neuroscience and Neuroimaging Lab and an associate professor of kinesiology and applied physiology, who uses advanced imaging techniques to study the disease.

While most Parkinson鈥檚 research focuses on听early stages, Burciu is dedicated to studying the full spectrum of the disease and its subtypes. Because symptoms and progression can vary widely among patients, understanding the differences can help develop tailored interventions.

Addressing these challenges requires听thinking outside the box. While some Parkinson鈥檚 symptoms, such as slowed movements and tremors, respond well to medication, others, like walking and balance, are often more difficult to control. Burciu鈥檚 current research explores safe, non-invasive ways to improve these functions.听

In one project, small electrodes are placed on patients鈥櫶齭calps to deliver low-voltage currents directly to the brain,听similar to听common techniques used to stimulate muscles. Burciu's unique study targets the primary motor cortex, which controls leg and foot movements, and places patients in a magnetic resonance imaging (MRI) scanner, allowing researchers to see how the brain responds in real time.

Securing funding for experimental work like this can be challenging. Thanks to support from 91原创鈥檚 Maggie E. Neumann Health Sciences Research Fund, Burciu has been able to conduct听the innovative听research.

鈥淭o change the way we treat Parkinson鈥檚 disease, we need to run pilot studies like these and explore ideas that go beyond conventional approaches,鈥 Burciu said. 鈥淢any promising directions听don鈥檛听fit easily into standard funding mechanisms right now. The Neumann Fund makes it possible for me to explore these innovative, early-stage studies that could lead to major advances in Parkinson鈥檚 treatment.鈥

The Neumann Fund was听established听in 2020 to support research designed to improve health and quality of life outcomes for children and adults with physical and developmental disabilities. While the fund听resides听in the College of Health Sciences, the intent is to support interdisciplinary research across all 91原创 colleges.听

The research fund was created with a gift from Donald J. Puglisi, 12H, and Marichu C. Valencia, 23H, in honor of their granddaughter, Maggie听E. Neumann. Puglisi is a member of 91原创鈥檚 Board of听Trustees听and both he and Valencia serve on the President鈥檚 Leadership Council.

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CREATING COMMUNITY

Over the past eight-plus years, Lyons has been involved in a multitude of research projects, which he hears about through 91原创鈥檚听. Led by Burciu, the registry connects individuals with a variety of voluntary study opportunities,听information听and a supportive community.

Lyons has been involved with typical hand-eye coordination tests, timing how long it takes to button his shirt and exercise programs. Some of the projects are even fun, like an experiment where Lyons wore virtual reality gear. Walking on a treadmill while the horizon shifted, trying to trick him into thinking he would fall?听That was听really cool, like a game.听

The other 鈥渇un鈥 aspect of being involved in Parkinson鈥檚 research at 91原创 is the welcoming community Lyons has connected with.

鈥淏eing involved in the research at 91原创 has helped me come to a better understanding of what Parkinson鈥檚 is all about, and I think that鈥檚 really helpful in moving forward,鈥 Lyons said. 鈥淚鈥檓听not that comfortable with large Parkinson鈥檚 support groups, but I have made some good friends with patients involved in the research here. Meeting those other people is interesting. There was a Parkinson鈥檚 symposium in Wilmington recently, so a couple of us went to see that.鈥

Burciu and Knight have noticed similar strong social connections with nearly听all of听their participants.听They听want that听to extend to southern Delaware, too. By expanding 91原创鈥檚 research presence, they can help more Parkinson鈥檚 patients, investigate new听treatments听and听establish听close-knit communities across the state.

Meanwhile, Lyons is glad to continue spreading the word about Parkinson鈥檚 disease. It means people will better understand the intricacies of the disease and what it looks like. The local support network will grow, and the entire Parkinson鈥檚 community 鈥 patients, caregivers, researchers听鈥 will strengthen.听

What it all comes back to is听community. A patient听who鈥檚听been involved in 91原创鈥檚 Parkinson鈥檚 research for about seven years even told Burciu as much: 鈥淚 come because of the sense of community. I belong to a larger group.鈥澨

鈥淩esearch is a team effort that brings together scientists, clinicians and patients,鈥 Burciu said. 鈥淓very single participant helps us move closer to breakthroughs that can improve听lives.听Thanks to generous funding, 91原创 is a hub for making real progress against Parkinson鈥檚.鈥

Inspired by the impact of research and community?听听to support Parkinson鈥檚 research at 91原创 or volunteer by emailing pd-registry@udel.edu.


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