WHAT WOULD YOU FIGHT FOR?

FIGHTING FOR THE LIVES OF CHILDREN AND FINDING A CURE FOR NPC DISEASE The University of Notre Dame’s award-winning “What Would You Fight For?” series showcases the work, scholarly achievements, and global impact of Notre Dame faculty, students, and alumni. These two-minute segments, each originally aired during a home football game broadcast on NBC, highlight the University’s proud moniker, the … Read More

Take the No Pucker Challenge

Take the No Pucker Challenge! The Ara Parseghian Medical Research Fund is partnering with Hope For Marian to help raise funds for Niemann-Pick Type C disease. This is a simple and fun (and a bit sour) challenge to help raise awareness and 100% of your gift supports NPC research. How the No Pucker Challenge works: STEP 1: Eat a lemon! (try not … Read More

COFFEE FOR A CURE!

The Ara Parseghian Medical Research Fund and the College of Science recently launched the ‘Coffee for a Cure’ program with Mother Parker’s brands of coffee and Tim Hortons.  They have committed to donate five cents to rare disease research for every cup ($1.20/box of 24 cups) of Tim Hortons coffee purchased through this WEB LINK (orders in Canada can use this LINK). A portion of the proceeds … Read More

Ara Parseghian’ Legacy

Ara Parseghian

Ara Parseghian passed away on August 2, 2017 at the age of 94.  He not only had a tremendous impact on the Notre Dame community, but on the NPC community as well.  The dedication and perseverance of Ara and his family is why a treatment and cure for NPC disease is in reach. Click on this LINK to learn more … Read More

2017 APMRF Funded Grants

We are excited to announce the 2017 APMRF funded grants.  Please go to this LINK to see the list of funded researchers and the focus of their research. Research areas range from fundamental science of the NPC pathway, the development of new therapeutics for NPC disease, and also the support of new gene-therapy efforts.  We are also very excited that … Read More

2017 Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research

NPC researchers and families from all over the world gathered in Tucson, AZ on June 3-6, 2017 for the annual Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research.  It was a great opportunities for scientists to collaborate and share their advancements in research.  There were also a number of NPC families who were able to meet the researchers who … Read More

Research supported by the Ara Parseghian Medical Research Fund reaches important milestone

In the late-2000s, the foundation supported many early-stage research programs to investigate therapeutics for NPC disease. One such class of compounds were called cyclodextrins, and they showed dramatic improvements in cell culture studies and animal models with the NPC mutation.  On March 15, 2017, Vtesse, Inc. (recently acquired by Sucampo Pharmaceuticals, Inc.) announced full enrollment in the Phase 2b/3 clinical … Read More

Road To Discovery Bike Ride–May 16 & 17

Students from ESTEEM (Engineering, Science, & Technology Entrepreneurship Excellence Master’s Program) at Notre Dame are organizing the 2017 Road to Discovery event: a two-day bike ride on May 16 and 17, 2017, that will start in Notre Dame, Ind., head to Chicago, Ill., and circle back to Notre Dame. The goal of the annual Road to Discovery bike rides are to raise funds and awareness for the Ara … Read More

Firefly Fund–Hope for Belle and Abby Andrews

The Firefly Fund was started in 2016 by Pam and Chris Andrews, whose six and two years old daughters, Belle and Abby, were recently diagnosed with NPC disease.  Since the diagnosis the family formed the Fund, set up a collaboration with Dell Children’s Hospital in Austin, TX, and have in enrolled their children in the Vtesse VTS-270 clinical trial. On … Read More

2017 Infiniti Coaches Charity Challenge–Fundraiser for NPC Research

The 2017 Infiniti Coaches Charity Challenge tipped off on January 2nd, 2017. Coach Matt Painter of Purdue will be representing the Smith Family BReaK Thru Fund, which supports the APMRF research efforts to find a cure for Niemann-Pick Type C (NPC) Disease. Yes!  We not only collaborate with other Universities on our NPC research efforts, but also with our fundraising efforts. How does it … Read More