"We've met too many other families and too many other beautiful children, who have Niemann-Pick Type C who really need to be saved." - Mike Parseghian
The University of Notre Dame launches the Ara Parseghian Medical Research Fund
In 2010, the University of Notre Dame and the Ara Parseghian Medical Research Foundation formed a partnership dedicated to finding a treatment for Niemann-Pick Type C (NPC). Through this partnership the University and the Foundation jointly fundraise for NPC research and support the administration of grants, internally and externally, to researchers around the globe.
Now, the University is poised to launch the Ara Parseghian Medical Research Fund that will take on the roles and responsibilities of the Foundation and drive the Foundation’s fundraising and research efforts to find a cure. The University is also pleased to announce Sean Kassen, PhD, as the new director of the Ara Parseghian Medical Research Fund.
Over the next several months the foundation will be moving all of these functions from the granting process, marketing/communication, and fundraising efforts to Notre Dame.
Please know that Coach Ara Parseghian as well as Mike and Cindy Parseghian will continue to be actively involved in fundraising and supporting the new Ara Parseghian Medical Research Fund at Notre Dame for many years to come.
ROAD TO DISCOVERY--POWERED BY ESTEEM
In the spirit of the University's mission, in 2016, Students of the ESTEEM program in collaboration with the College of Science are organizing a four-day bike ride from May 8th to 11th, 2016 with a goal of raising $150,000 for Niemann-Pick Type C (NPC) and rare disease research.
The 350 mile bike ride will begin in Louisville, KY. on May 8th and conclude in South Bend, IN. on May 11th.
Please go to this link to learn more about ESTEEM and the 2016 bike ride. http://esteem.nd.edu/legacy/road-to-discovery/
We are seeking partners to support our efforts to raise awareness and funding for rare disease research, and we need your help.
Please consider making a gift at one of the following levels:
• A gift of $10/mile $3500
• A gift of $1/mile $350
• A gift of $.10/mile $35
Gifts can be made online at http://esteem.nd.edu/legacy/road-to-discovery/, or checks can be made out to the University of Notre Dame. Please write the Ara Parseghian Medical Research Fund in the memo. Checks can be sent to: Sean Kassen, 215 Jordan Hall of Science, Notre Dame, IN 46556.
A Legacy of Hope
From beautiful identical twins to aspiring firefighter, the children affected with Niemann-Pick Type C will inspire you with their stories of hope and courage.
Join the Fight
The Parseghians, Notre Dame and the families that battle Niemann-Pick Type C everyday need your help and support in the fight against NPC.
Niemann-Pick Type C (NPC) is a rare and deadly neurodegenerative childhood disease that primarly strikes children.
Learn more about NPC.
Notre Dame, in partnership with the Ara Parseghian Medical Research Foundation, is actively engaged in research seeking a cure for NPC.
Learn more about our efforts