CF Part of New $10 Million Rare & Neglected Diseases Research Grant at Notre Dame

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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CF drug for Exocrine Pancreatic InsufficiencyIndiana-based University of Notre Dame, a Catholic research university, has just received a generous gift from a pair of prominent families to fund the institution’s Center for Rare and Neglected Diseases. This specialized center will now be known as the Boler-Parseghian Center for Rare and Neglected Diseases, in commemoration of the $10 million endowment to further research and development for these under-recognized diseases. For Notre Dame’s School of Science, the launch of the Boler-Parseghian Center for Rare and Neglected Diseases will mark a new chapter in focusing on Cystic Fibrosis Research for the school. The Center has listed Cystic Fibrosis as one of its targeted rare diseases that the new funding and effort will seek to address through therapeutic research and development.

Rare diseases are categorized as those that affect less than 200,000 people. Some of the diseases classified as rare are thalassemia, Niemann-Pick Type C, some types of cancer, and cystic fibrosis. Neglected diseases, however, affect billions of people all over the world but are mostly found in developing countries. Today, whether a disease is rare or neglected, there remains an unmet need for better solutions and treatments.

The university’s president, Rev. John I. Jenkins, C.S.C., said that the Boler and Parseghian families have played an active and valuable philanthropic role for many years at Notre Dame. There is no doubt their donation will give the center the boost it needs to address the lack of research and solutions for the world’s rare illnesses.

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The Boler family is headed by Matthew Boler, a Notre Dame alumnus and member of the Undergraduate Experience Advisory Council. He is also the President and CEO of The Boler Company, a 37-year-old global manufacturer and supplier of medium- and heavy-duty commercial vehicle suspensions. His wife Christine is a registered nurse, and they are parents to 3 children. Matthew’s sister, Jill McCormack, is also an alumnus and a member of the College of Science Advisory Council. Jill and her husband are veterinarians, and are parents to 4 children, with 2 currently enrolled at Notre Dame.

“Our parents always demonstrated to us that in order to take on the most difficult challenges, we need to view them as opportunities for hope and change. We are honored to be able to join with the Parseghians and the University in this fight for those who often feel they have little reason for hope due to a lack of cures and therapies for rare and neglected diseases. This is a tremendous challenge, and our family can think of no better way to honor our parents.”

The Parseghian family is comprised of Michael and Cindy, who founded the Ara Parseghian Medical Research Foundation for research efforts on Niemann-Pick Type C, a rare disease that has claimed the lives of 3 of their 4 children. Michael is an orthopedic surgeon in Arizona and a member of the university’s College of Science Advisory Council. His wife is the president of their foundation and a member of Notre Dame’s Board of Trustees.