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More than a coach

Molly Acker | Wednesday, October 27, 2004

For those who attended Notre Dame or Saint Mary’s during the ’60s and ’70s, Ara Parseghian was as much a part of their college experience as the Golden Dome, Touchdown Jesus and the Grotto. Perhaps Notre Dame’s most charismatic coach since Knute Rockne, Ara Parseghian led the Fighting Irish from 1964-75 and won two national championships. In retirement, he has remained a respected member of the South Bend community and is still one of Notre Dame’s greatest ambassadors.

During halftime of last Saturday’s Notre Dame/Boston College game, NBC ran a profile on Parseghian and his courageous family. Parseghian, who recently turned 80, has taken up a crusade against Niemann-Pick Type C, a rare, neurodegenerative disease. The disease, commonly known as NP-C, has tragically taken the lives of his two grandchildren, Michael and Christa, and has afflicted their sister, Marcia. In 1994, Ara began the Ara Parseghian Medical Research Foundation, a non-profit organization that funds research projects aimed at finding a treatment and cure for NP-C, as well as other neurodegenerative disorders.

NP-C is a genetic, pediatric neurodegenerative disorder which causes a build-up of cholesterol that affects the liver and spleen and causes the accumulation of gangliosides in the brain. This eventually results in damage to the nervous system and neurological problems that ultimately result in death. The scientific advisory board of Parseghian’s foundation has already made great progress in their research efforts. They have come so far as to identify the gene that causes NP-C, and they are still tirelessly looking for a treatment and cure.

I first learned about NP-C in the fall of 2001, shortly before Christa’s death. When I came to visit Saint Mary’s, I had an admissions interview with Jamie Humbert, Ara Parseghian’s granddaughter. She told me about the fatal disease that afflicted her cousins. Although it was a very difficult time for Jamie and her family, her strength was remarkable. Especially inspiring was the positive attitude she and her family was able to maintain in the face of this deadly disease. She recognized that, because of her grandfather’s fame, her family has been able to initiate progress towards the cure. I have since kept her younger cousins and family in my thoughts and prayers.

While we college students may not yet have the resources to donate to the Ara Parseghian Medical Research Foundation and other organizations seeking to cure NP-C, it is important to remember Ara and his courageous family in our prayers. He has contributed so much to the Notre Dame community. God willing, NP-C will not personally affect us as it has the Parseghian family. However, many of us have suffered a great loss or have a history of family disease. Therefore, we understand the importance of support and encouragement during difficult times. The next time you are at the Grotto, light a candle for the Parseghian family.

For more information about NP-C, you can visit the Ara Parseghian Medical Research Foundation Website at pareseghian.org or the National Neimann-Pick Disease Foundation, Inc. at nnpdf.org.

Molly Acker is a junior communications and humanistic studies double major at Saint Mary’s. Her column appears every other Thursday. She can be contacted at [email protected]

The views expressed in this column are those of the author and not necessarily those of The Observer.