Ara Parseghian Medical Research Fund launches at Notre Dame

Author: Marissa Gebhard

Marcia, Christa And Michael Parseghian, three grandchildren of legendary Notre Dame football coach Ara Parseghian who were diagnosed with Niemann-Pick Type C disease Marcia, Christa and Michael Parseghian, three grandchildren of Ara Parseghian who were diagnosed with NPC disease

Building on the partnership that the University of Notre Dame formed with the Ara Parseghian Medical Research Foundation in 2010, the University has now established the Ara Parseghian Medical Research Fund and is moving the administrative functions and granting process of the foundation from Tucson, Arizona, to Notre Dame.

Through this partnership, the Parseghian family will continue their fight to find a cure or treatment for Niemann-Pick Type C (NPC) disease, a rare, fatal neurodegenerative disease for which there is currently no cure, and will continue to help fundraise and support researchers around the world.

The fund will continue to support a competitive granting process, expand the fundraising efforts to support NPC research, raise awareness for the disease, manage communications and oversee an annual research conference in which researchers from around the world collaboratively share their findings. Notre Dame alumnus Sean Kassen has been appointed director of the Ara Parseghian Medical Research Fund. “I feel privileged to take on this role and work toward fulfilling the legacy of the foundation, Coach Ara Parseghian and the entire Parseghian family,” Kassen said.

“Notre Dame is a true blessing to all families who struggle with the ravages of NPC disease. We are confident in the future of NPC research with Notre Dame taking on this pivotal role. Sean Kassen, as director of the fund, is uniquely qualified to head the effort with his past experience in development and his Ph.D. in biology,” said Cindy Parseghian, president of the Ara Parseghian Medical Research Foundation.

Building on the initial partnership in 2010, Notre Dame recently established the Warren Family Research Center for Drug Discovery and Development, a resource for the worldwide NPC research community that can assist in the design and synthesis of drug candidates. Center researchers lead multidisciplinary collaborations with medical centers at Cornell, Columbia, Tufts, University of Texas Southwestern and Washington University, along with researchers at Perlstein Lab, PBC, Purdue University and the Scripps Research Institute. Compounds produced in the center are now under active investigation in the labs of each of these collaborators.

“The Parseghians’ search for a treatment for this terrible disease was an inspiration for the creation of the Warren Center, and we look forward to doing all we can to continue to support the goals of the Ara Parseghian Medical Research Fund in the future,” said Rich Taylor, interim director of the Warren Family Research Center for Drug Discovery and associate vice president for research at Notre Dame.

NPC researchers, including a core group of eight Notre Dame faculty members, have made tremendous progress on finding a treatment for and a better understanding of NPC. Highlighting this effort is Paul Helquist, professor of chemistry and biochemistry, who along with collaborators at Notre Dame and other institutions has developed a promising drug candidate that is currently in clinical trials.

Through partnerships in the Boler-Parseghian Center for Rare and Neglected Diseases, multiple studies have been funded to identify the molecular mechanisms behind NPC disease, develop new NPC disease models, identify novel techniques to better understand the disease, and support young investigators to perform research on NPC disease.

Contact: Sean Kassen, 574-631-4689,