Rare Disease Report

Foundation of Late Football Legend Leads the Way for NPC1 Research

FEBRUARY 02, 2018
Mathew Shanley
The late Ara Parseghian, former head football coach at the University of Notre Dame, continues to make his mark on the rare disease community.

The director of the Ara Parseghian Medical Research Fund Sean Kassen promoted the organization’s new initiatives to raise money for research during an address to Notre Dame’s student senate this week. On Wednesday, he introduced three new ways students can support the cause, including “Coffee for a Cure” Keurig cups, collecting can tabs, and taking the “Pucker Up” social media challenge.

Throughout his life, Parseghian stressed the importance of advocacy for Niemann-Pick Disease Type C (NPC1), a condition from which three of his four grandchildren suffered.

“Our hearts are broken. The pain of losing our three youngest grandchildren is almost unbearable,” said Parseghian in a written statement on the Ara Parseghian Foundation website. I think of other grandparents whose grandchild has recently been diagnosed with NP-C. We will keep up the fight for them and all families afflicted with this terrible disease.”

NPC1 is a lysosomal storage disease, categorized by the buildup of cholesterol and other lipids in the lysosomes. Symptoms vary from patient to patient, however, in most instances, the symptoms typically pertain to the brain because of dystonia and cataplexy to seizures and dementia.

“I met with [student body president] Becca [Blais] probably about four or five months ago and said, ‘How can we partner with the students and see if we can get them more engaged?’” Kassen said in The Observer, the student-run daily print and online newspaper of the University of Notre Dame.

“Coffee for a Cure,” he noted, emerged out of a collaboration between business professor and Keurig co-founder Chris Stevens and Mother Parkers Tea and Coffee. For every ‘K cup’ purchased sold on campus and externally, 5 cents will be donated to rare disease research. The “Pucker Up” challenge is a social-media based fundraiser in which participants attempt to eat a slice of a lemon without puckering. Like the “Ice Bucket Challenge” before it, participants can either try the challenge or donate.

The initiative to collect can tabs is being run as part of the Ronald McDonald House’s recycling program.

“We’re committed to find a cure for these rare diseases. We’re trying to raise about a million-and-a-half a year,” said Kassen.

Parseghian created the fund in 1994 – nearly 20 years after his career commenced. Since its inception, it has raised more than $15 million for research of NPC1.

The South Bend, Indiana legend won 2 NCAA National Championships as the head coach of Notre Dame’s football team (1966, 1973) and was inducted into the College Football Hall of Fame in 1980.

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