A Closer Look at a Big Gift for Rare Diseases to Notre Dame

Simply put: Sometimes it’s personal, and sometimes it just ain’t. The latest big gift the University of Notre Dame received to support its Center for Rare and Neglected Diseases illustrates exactly that.

We know of plenty of wealthy donors giving to nail the specific disorder their parent/spouse/child succumbed to. Often, it’s the rare ones: It’s Catherine Ivy plugging away at a cure to glioblastoma multiforme in the memory of her deceased husband. It’s Dan Gilbert throwing money at neurofibromatosis while his son suffers. It’s Sergey Brin funding the Michael J. Fox Foundation’s pursuit of a cure for Parkinson’s, a disease for which he is genetically succeptible. And the list goes on. 

Sometimes, this sort of approach is the best way to honor a loved one’s memory, and sometimes a family member can’t bear watching a loved one struggle without doing something about it. It’s kind of a narrow mindset, we admit, but it’s still philanthropy. Whatever breakthroughs the Michael J. Fox Foundation achieves will benefit way more than just the Google billionaire.

Yet sometimes it isn’t so personal. Notre Dame’s Center for Rare and Neglected Diseases just received a $10 million joint gift from two families. The Boler family has absolutely no history of rare disorders, and yet they’re chipping in with a sizable sum of money to support the center. In this case, the gift is more about the family’s connection to the college itself.

Matthew Boler and his sister Jill Boler McCormack are both alumni. Boler founded an automotive systems manufacturing company, while his sister Jill works as a veterinarian and is a member of the university’s College of Science advisory council. Two of her children are currently students at the university, as well. In a lot of ways, the timing was just right to do something significant and substantial to honor their own pasts at Notre Dame and to add promise to their children’s futures.

Things get more personal on the other side of this large gift, however. The Parseghian family has all of the connection to Notre Dame that the Bolers do, plus the additional tragedy of having lost three children to Niemann-Pick Type C (NPC) disease. NPC is horrifying. It only afflicts one in 150,000 people, and sufferers rarely live beyond early childhood. It interferes with the way lysosomes store cholesterol, resulting in tremors, slurring, unsteady walking, palsy, dementia, bipolar disorder and depression.

Can you even imagine watching three children succumb to something so terrible? “The Notre Dame community has embraced our family as we struggled with the loss of our three children,” the Parseghians said. “Notre Dame is unique in its mission to serve the disadvantaged, including the millions who struggle with rare and neglected diseases. We are blessed to be part of this great community.”

Their gift will go towards finding a cure not just for NPC, but for cystic fibrosis, thalassemia, Niemann-Pick Type C and several rare forms of cancer. The gift will also address diseases like tuberculosis, malaria, and lymphatic filariasis, which are mostly a problem in the developing world.