What is NPC disease? How can you help?
Let's win one more for Ara! Join us on April 23 at the 8pm hour when Cindy Parseghian is interviewed by Joe Theismann 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!
Donations are applied to...
Donations are directly given to the Ara Parseghian Medical Research Fund (APMRF), and 100% of your gift and votes will support NPC research. We are partnering with the ESTEEM Program at Notre Dame, which will be utilizing Notre Dame Day to help promote their Road To Discovery bike ride to raise funds and awareness for the APMRF. PLEASE make a minimum $10 gift to support the APMRF, and then give us your 5 votes. Then tell your friends and family to do the same! This is the best way to guarantee we secure the largest portion of the $1 million match!
Ara Parseghian Medical Research Fund at Notre Dame
HERE IS THE LINK TO WATCH CINDY PARSGEGHIAN'S INTERVIEW https://youtu.be/uR_qaNOflk4. In 1994, Notre Dame alumni Cindy and Michael Parseghian created the Ara Parseghian Medical Research Foundation after three of their four children were diagnosed with Niemann-Pick Type C (NPC) disease: a rare, genetic, neurological disorder that primarily strikes children, with death occurring before or during adolescence. The foundation is named after Ara Parseghian, the legendary Notre Dame Football coach, and the children’s grandfather. This past year, the foundation permanently merged with the University of Notre Dame to create the Ara Parseghian Medical Research Fund (APMRF). The APMRF will carry on the legacy of the Parseghian family and their efforts to find a cure. Working closely with the Parseghian family, the APMRF at Notre Dame will continue to expand its efforts to raise funds to support the top NPC research around the globe, oversee the annual scientific research conference, and raise awareness for NPC. TOGETHER WE WILL FIND A CURE! Learn more at PARSEGHIANFUND.ND.EDU
Road To Discovery Heads to Chicago!
The University of Notre Dame has raised research funds and awareness for Niemann-Pick Type C (NPC) through a variety of fundraisers, including five cross-country Road To Discovery bike rides that visited more than 150 cities, held over 125 events, published myriad news stories, and raised over $1 million for NPC disease research. This spring, the University’s ESTEEM (Engineering, Science, & Technology Entrepreneurship Excellence Master's) program is taking on the cause and organizing a two-day bike ride on May 16 and 17, 2017. The route goes from Notre Dame to Chicago, and then circles back to ND. The group's goal is to raise $75,000 for the Ara Parseghian Medical Research Fund. 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 http://parseghianfund.nd.edu/2017-road-to-discovery-bike-ride/.