Motivated by the experience of caring for two children with a rare disease, Dave and Cathleen Reisenauer have made a transformative gift to the University of Notre Dame to establish a rare disease institute within the — allowing the University to build on its legacy and leadership in the rare disease space.
The Reisenauer Institute for Rare Diseases will help to bridge the gaps between scientific understanding and the daily experiences of those living with rare conditions, consistent with the University’s Catholic mission and strategic framework. In doing so, it will take a multidisciplinary approach to problem-solving, with connections to the University’s strategic framework — specifically, the and the subsections of the .
In the United States, a rare disease is defined as a medical condition impacting fewer than 200,000 people. However, aggregated across the landscape of the nearly 10,000 known rare diseases, ; as many as half are children.
“This extraordinary gift from the Reisenauers will enable Notre Dame to more effectively prepare the next generation of educators, patient advocates and researchers in a collaborative effort to prevent, treat and cure rare diseases,” said , the Charles and Jill Fischer Provost. “Such important work is central to Notre Dame’s as articulated in our .”
Notre Dame’s efforts in the rare disease space began more than a decade ago with the establishment of the Boler-Parseghian Center for Rare Diseases, and continued with the creation of the distinctive program and the .
“As Notre Dame parents and as the parents of two children with an ultra-rare disease, our hope is that this transformative gift leads to real breakthroughs in the rare disease space, in terms of research as well as patient and family advocacy, support and care.”
The new institute will build on those efforts but with a fresh approach — one that, consistent with the University’s Catholic mission and values, centers patients and their experiences and aims to make a difference for the rare disease community through intentional integration of research, advocacy and education, guided by a deep commitment to ethical engagement and to honoring the dignity of patients and their families.
To that end, the institute will invest in the people, programs and tools required to achieve positive momentum in the rare disease space, emphasizing scalability, reproducibility, collaboration and cross-functional partnerships.
As a key first step in launching the institute, the College of Science is currently undertaking an international search for its inaugural director with support from the executive search firm Spencer Stuart.
Ultimately, the institute aims to be a beacon of hope for the rare disease community, revolutionizing care by uniting patients and experts to accelerate therapy development, empower organizations and train the next generation of advocates for lasting impact.
“We are deeply grateful to Dave and Cathleen Reisenauer for their extraordinary generosity,” said , interim dean of the College of Science. “Their gift will allow us to unite research, education and patient advocacy in a way that reflects our Catholic mission and commitment to serving the most vulnerable, and to pursue this work with integrity and respect for the families who place their trust in us.”
Cathleen Reisenauer is a member of the Notre Dame College of Science Advisory Council. Dave Reisenauer, now retired, is the former director of digital transformation for Nvidia, the world’s leading artificial intelligence chipmaker.
The couple has three children: Peter, Cayla and Andrew. Peter and Andrew are both Notre Dame graduates and are now practicing attorneys. Peter and Cayla both live with Cori disease/GSD type IIIA, a genetic disorder characterized by the accumulation of glycogen in the body’s cells, leading to impaired organ and tissue function, particularly affecting the liver and muscles. Cathleen is a full-time caregiver to Cayla, who is severely disabled.
The experience of navigating Peter and Cayla’s diagnoses has shaped and inspired their philanthropy, which includes previous gifts to Notre Dame to establish and strengthen the Reisenauer Excellence Fund for GSD and Related Disease Research; support the ; endow the director of patient advocacy education and outreach position within the Patient Advocacy Initiative; and support an associate director for external engagement for the Patient Advocacy Initiative.
“Our experience working with the College of Science in support of patient advocacy has only reinforced our belief in Notre Dame’s capacity to improve the lives of those living with rare diseases,” Cathleen Reisenauer said. “As Notre Dame parents and as the parents of two children with an ultra-rare disease, our hope is that this transformative gift leads to real breakthroughs in the rare disease space, in terms of research as well as patient and family advocacy, support and care.”
Proud graduates of Gonzaga University, the Reisenauers have also made gifts to their alma mater, for both learning and athletics. Recently, they have also lent their support to a program at Nationwide Children’s Hospital, the Reisenauer Precision Gene Therapy Fund, aimed at developing therapies for ultra-rare disorders and engaging with the patients and families affected by these diseases.