With support from a gift by the Reisenauer family, the Notre Dame College of Science will establish an Institute for Rare Diseases to foster collaboration in research, patient advocacy and education for people with rare diseases. The amount of the Reisenauer family’s gift has not been made public.
According to a University press release, Dave and Cathleen Reisenauer are the parents of Peter, Cayla and Andrew Reisenauer. Peter and Andrew graduated from Notre Dame. Peter and Cayla live with Glycogen Storage Disease (GSD) Type III. Cathleen Reisenauer also serves on the advisory council for the College of Science. Dave Reisenauer said the family has been involved with research focusing on rare diseases at Notre Dame since 2008.
“When we first started having conversations, they were very open to taking a look to see if there was an opportunity for Notre Dame to look at the disease my kids have,” Cathleen Reisenauer said.
Professor of chemistry and biochemistry Olaf Wiest said that, as of two or three years ago, more research was needed to validate the target enzyme involved in GSD before researchers could approach it from a chemistry perspective.
Cathleen Reisenauer said Notre Dame has already brought on two researchers from the University of Chicago and the University of Iowa who have been working on Niemann-Pick disease type C and have also offered to work on GSD Type III.
Rich Taylor, a professor in the department of chemistry and biochemistry, said he and several colleagues were introduced to Niemann-Pick disease type C in the mid-1990s by the Parseghian family.
“It is a disease that took three of their children, Cindy and Mike Parseghian’s children, the grandchildren of Ara Parseghian,” Taylor said. Ara Parseghian led Notre Dame’s Fighting Irish football program as head coach from 1964 to 1974 and is renowned for winning Notre Dame’s national championships in 1966 and 1973.
Taylor said pharmaceutical companies often focus on drugs with broader markets, while Notre Dame’s mission created an opportunity to build a community of researchers committed to rare diseases.
“The vision was always that this would start with Niemann-Pick Type C, but that would be far from where we would end,” he said.
Dave Reisenauer said, in general, rare disease work centers on four areas: policy, research, education and advocacy. About seven years ago, he said his family began discussing how to expand Notre Dame’s work beyond research and into advocacy. Those conversations led to the endowment of the director of rare disease patient advocacy position and, later, the creation of the patient advocacy minor.
That position is currently held by Barbara Calhoun, who was unavailable for comment.
Dave Reisenauer said the new institute is designed to bring together the four major pillars of rare disease work, build partnerships around the world and address what he described as more than 7,000 rare diseases. He also said the institute is currently developing a model for research workshops that connect researchers directly with patients. The first workshop for GSD Type III was held last June, and a second is scheduled for this June.
“The power of that is not only do the researchers get to see patients and talk to them in real time, but again, the patients are getting to see there is a network, there is a group of folks that are hearing them, seeing them for who they are,” he said.
For Rare Disease Day on Feb. 28, Notre Dame hosted an event that drew its largest group of patients yet, with 20 to 30 patients representing a variety of rare diseases in attendance, Dave Reisenauer said.
In a written statement to The Observer, Steve Corcelli, William K. Warren Foundation interim dean of the College of Science and professor in the department of chemistry and biochemistry, said the new institute will bring together more than two decades of work in rare disease research under “a unified structure” consistent with Notre Dame’s mission.
A University spokesperson also wrote in a statement to The Observer that the Institute for Rare Diseases will serve as “a central organizing framework,” bringing together the Boler-Parseghian Center for Rare Diseases, the Patient Advocacy Initiative and the Ara Parseghian Medical Research Fund. The spokesperson said those entities will remain distinct but will operate within the institute to strengthen coordination and create new opportunities for collaboration.
In his statement, Corcelli wrote that ND Day remains an important moment for the Notre Dame community to support rare disease research.
“Last year, we raised more than $720,000, driven largely by enduringly strong support for the Ara Parseghian Medical Research Fund,” he wrote in a statement to The Observer.
