The Courage of a Mother, with Cindy Parseghian

Cindy Parseghian is actively shaping the future. In 1994, she and her husband Mike founded a foundation dedicated to finding a cure for Niemann-Pick disease type C (NP-C), a genetic, cholesterol storage disorder that claimed the lives of three of their four children. The foundation joined forces with the University of Notre Dame in 2015, and together they fight daily to end this devastating disease. The Parseghian family was blessed with four children: Ara, Michael, Marcia, and Christa. Sadly, only the eldest, Ara, tested negative for the genetic disease. The diagnosis and subsequent loss of her three children brought Cindy indescribable pain, challenged her faith, and altered her life's trajectory. Just two months after receiving the diagnosis, Cindy established the Ara Parseghian Medical Research Foundation. Since then, millions of dollars have been raised each year, fueling significant progress towards eradicating a disease that can affect the brain, nerves, liver, spleen, bone marrow and sometimes the lungs. Symptoms can hit children in a variety of debilitating ways, including losing the ability to walk, vision, hearing and speech loss, and repeated infections. Far too many young lives have ended too soon.

But story is evolving. The foundation's work is now funding revolutionary research and providing hope to future parents who may face similar challenges. Recently, the FDA approved two therapies for NP-C patients which sometimes can take place over 5 -10 years as part of the drug trials. These children/patients are able to maintain their quality of life and appear to be living longer. In addition, more young adults are being diagnosed in their early 20s usually after experiencing some form of psychosis (they have a different genetic mutation that is associated with a late on-set form of NP-C.) All of these factors are adding up to a longer life span for NP-C patients and better news for families.

Cindy's response to her tragedy is profoundly inspiring. She found purpose and strength amid intense grief and launched a foundation with a dedicated mission to help others, while always keeping her children's memories close to her heart. As you will hear in this warm and enlightening podcast conversation with Bill, Cindy expresses immense gratitude for everyone who has contributed to the cause and become part of the team to end NP-C. We encourage you to learn more about the foundation, the benefits of the research, and consider making a tax-deductible contribution. Please go to https://parseghianfund.nd.edu 

You can listen to the podcast here, on your favorite streaming service or watch on YouTube.