Join the Parseghian family and help us win the fight against Niemann-Pick Type C disease! Watch on April 22 at the 8pm hour when Cindy Parseghian is interviewed as part of the Notre Dame Day broadcast to share the latest updates on her family’s fight to find a cure for Niemann-Pick Type C (NPC) disease! NPC is a rare, genetic, neurological disorder that primarily strikes children, with death occurring before or during adolescence. Sadly, in 1994, three of legendary Notre Dame football coach Ara Parseghian’s grandchildren (Michael, Marcia, and Christa) were diagnosed with the disease. Cindy and Michael Parseghian (parents of Michael, Marcia, and Christa) along with their entire family fought relentlessly to find a cure and sought to save their children’s lives by establishing a foundation. When the foundation launched, there was limited knowledge of what caused NPC disease. There were no treatments, and the first NPC conference the foundation hosted was attended by only two researchers. Since then, they have raised in excess of $45 million, supported more than 75 scientific labs around the globe, and, as such, boosted conference attendance to over 75 NPC disease researchers. Recently, the foundation formally merged with Notre Dame to create the Ara Parseghian Medical Research Fund (APMRF). In the decades since its launch, the foundation has made several great strides, including isolating the NPC1 gene, and understanding the NPC pathway and its role in transporting cholesterol in the cell. There are a number of potential life-saving therapeutics in clinical trials, including one that is in a phase 2b/3 trial and we hope will become the first approved therapy in the USA. Today, a great deal is known about this once-obscure disease, thanks to the courage, perseverance, and commitment of the Parseghian family, all families effected by the disease, NPC researchers, and also because of YOU, the foundation's great supporters! The Parseghian family lost Michael, Marcia, and Christa to NPC. However, with YOUR help, their fight continues: to FIND A CURE for all the other children facing this fatal disease. Give and vote today!
During this exciting time, we have the unique opportunity to earn a portion of a $1.1 Million! Make a $10 gift on Notre Dame Day (April 22 – 23), and receive 5 votes to cast. The total number of votes we receive decides our percentage of the $1.1 Million. Please vote for us!
This spring, the University’s ESTEEM (Engineering, Science, & Technology Entrepreneurship Excellence Master's) program is taking on the cause and organizing a four-day bike from May 13 - 17 that will follow Ara Parseghian's coaching career by starting in Oxford, OH, heading to Chicago, IL, and finishing at Notre Dame. This will be the 8th Road To Discovery bike ride which raises funds and awareness for APMRF. The students goal this year is to raise over $125,000 to support the APMRF The APMRF is partnering with them on Notre Dame Day to promote their Road To Discovery bike ride. And on the day of the ride, if you are in Chicago or the neighboring area, please join us for a reception…or start training and join ESTEEM on the road! Learn more at https://parseghianfund.nd.edu/events/road-to-discovery-bike-ride/