What is NPC disease and how can we help?
Niemann-Pick Type C (NPC) is a rare and deadly neurodegenerative disease that primarily affects children before or during adolescence. Sadly, three of legendary Notre Dame football coach Ara Parseghian’s grandchildren were diagnosed with the disease. The family fought relentlessly to find a cure, and sought to save their children’s lives by launching the Ara Parseghian Medical Research Foundation in partnership with Notre Dame. Due to the success of this collaboration, the Notre Dame family has made tremendous progress against NPC. Since 1994, several great strides have been made on the research front. The NPC1 gene was identified and sequenced, the structure of the protein and its function in the body has been identified, and there are even therapeutics that have been developed and currently in clinical trials as a potential treatment for NPC. Since the launch of the Foundation, the Parseghians and Notre Dame have raised money to fund research, and today we know a great deal about the once-obscure disease, thanks to their courage, perseverance and commitment. Additionally, because of our great supporters, there are currently over eight faculty members at Notre Dame conducting NPC research. The Parseghian family lost the three children to NPC: Marcia, Christa, and Michael. However, with YOUR help, their fight continues to FIND A CURE for all of those other families and children facing this fatal disease.
Donations are applied to...
Donations are directly given to the Ara Parseghian Medical Research Fund to further NPC research. We are also utilizing Notre Dame Day to help promote their Road To Discovery bike ride so please consider making a gift to sponsor the ride knowing that 100% of the proceeds go to support the APMRF at Notre Dame and our efforts to find a cure for NPC disease. You can make a minimum gift of $10 or sponsor the 350 mile ride at 10 cents/mile ($35); $1/mile ($350), or $10/mile ($3500) and then please vote for the Ara Parseghian Medical Research Fund at Notre Dame. On behalf of the ESTEEM Class of 2016, our goal is to raise $150,000 to donate to this Ara Parseghian Medical Research Fund.
Ara Parseghian Medical Research Fund
In 1994, the Ara Parseghian Medical Research Foundation was launched by Coach Parseghian, his son Mike, and his daughter-in-law Cindy, with the goal of finding a cure for Niemann-Pick Type C (NPC) disease. The disease eventually took the lives of Coach’s three grandchildren: Michael, Marcia, and Christa Parseghian. In 2010, the Paseghian Foundation and Notre Dame formed a formal partnership that allowed us to combine forces in order to fundraise, coordinate events, and advance research for this important cause. Now, the Foundation is permanently merging with the University of Notre Dame to create the Ara Parseghian Medical Research Fund (APMRF) that will take on a number of the administrative duties. APMRF at Notre Dame will continue to expand its fundraising efforts to support NPC research, administer a competitive granting process, raise awareness, manage marketing/communications, and oversee an annual conference. WE WILL FIND A CURE!
Road To Discovery--Powered by ESTEEM
The University of Notre Dame has raised funds and awareness for Niemann-Pick Type C (NPC) through a variety of fundraisers including five cross-country Road To Discovery bike ride, led by Greg Crawford, the former Dean of Science at Notre Dame. During these rides, Greg Crawford visited over 150 cities, held over 125 events, published a number of news stories and articles, and raised over $2.2 million for rare disease research. This spring, the University’s ESTEEM Masters of Science program is taking on the cause and organizing a four-day bike ride from May 8th -- 11th with a goal of raising $150,000 for the Ara Parseghian Medical Research Fund for Niemann-Pick Type C (NPC) disease research. The 350 mile bike ride will begin in Louisville, KY. on May 8th and conclude in Notre Dame, IN. on May 11th. We are utilizing Notre Dame Day to help promote their Road To Discovery bike ride so please consider making a gift to sponsor the ride knowing that 100% of the proceeds go to support the APMRF at Notre Dame and our efforts to find a cure for NPC disease.