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Couple establishes new research grant to improve lives of people with primary progressive aphasia

| Judy Berthiaume (story); Glen Mabie (video)

Photo caption: Dr. CeCelia Zorn, professor emerita of nursing, and her husband, Wayne Zorn, are funding a new grant to support research they hope will improve the lives of people diagnosed with primary progressive Aphasia and advance the understanding of the disease. The Wayne and CeCelia Zorn Primary Progressive Aphasia Research Grant is available to faculty, staff or students who want to collaborate on research with faculty in the communication sciences and disorders department.

A retired University of Wisconsin-Eau Claire nursing professor and her husband are funding a new grant to support research they hope will improve the lives of people diagnosed with primary progressive aphasia (PPA) and advance the understanding of the disease.

The Wayne and CeCelia Zorn Primary Progressive Aphasia Research Grant is available to UW-Eau Claire faculty, staff or students who want to collaborate on research with faculty in the communication sciences and disorders department.

Dr. CeCelia Zorn, professor emerita of nursing, and her husband, Wayne Zorn, have been raising awareness about PPA — a neurological condition that affects a person’s ability to communicate — since Wayne was diagnosed with the disease in 2014.

Since Wayne’s diagnosis, a community of speech-language pathologists, others living with PPA, family, friends and UW-Eau Claire CSD faculty, staff and students, have helped the couple participate in life “in the most meaningful way possible,” CeCelia says.

This community has improved the quality of their lives and has allowed them to enjoy many activities, including writing an article published in an international journal and working in a community garden, CeCelia says.

They are “thrilled” to establish a research grant they hope will help others “benefit from this community, learn more about PPA and explore approaches that make life better for people living with PPA,” CeCelia says.

The $2,500 grant, managed by the UW-Eau Claire Foundation, will support university research that examines the lived experiences of people diagnosed with PPA; proposes and evaluates strategies to help people with PPA and their families enjoy a higher quality of life; and helps students and clinicians learn more about PPA.

“PPA is devastating to the person diagnosed with it and to their families,” says Dr. Tom Sather, associate professor of communication sciences and disorders. “Their generosity in funding a grant that will make a difference in the lives of others with this disease is inspiring but not surprising.”

The Zorns have an “incredibly strong belief in the importance of community,” and the grant reflects their desire to make their community stronger and more supportive for those living with and without PPA, Sather says.

“Even with this very difficult trajectory of the disease, where Wayne’s language deteriorated, and his cognition and thinking declined, they’re ensuring that their experiences help others,” Sather says.

By sharing “very personal aspects of their journey” with faculty and students, clinicians and medical professionals, they shine a light on what it means to live with this disease, Sather says. As a result, “we all get better at providing services that better fit the needs and challenges of those living with PPA,” he says.

The couple’s goal, Cecelia says, is for the grant to encourage a “growing program of research around PPA.” They hope recipients will collaborate with other faculty, staff and students, as well as with speech-language pathology clinicians working in health care. 

“It’s an honor and a privilege to have this research grant opportunity for our campus,” Sather says. “It’s part of CeCelia and Wayne’s incredible story and legacy.”

If you would like to support to this project, you can contribute to the grant funds here.