"We miss Michael, Marcia and Christa so dearly. They--along with all the others who've lost their battles to NPC--have given us a...legacy of hope."

- Cindy Parseghian

What is NPC disease and how can we help?

NPC disease 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, and the entire family fought relentlessly to find a cure, and sought to save their children’s lives by launching a foundation.

When the foundation launched, there was limited knowledge of what caused NPC disease, no treatments, and the first NPC conference the foundation hosted had two researchers in attendance. Since then, they have raised in excess of $50 million, supported more than 100 scientific labs across the world, the yearly conference hosts over 100 NPC disease researchers, and in 2016 the foundation formally merged with Notre Dame to create the Ara Parseghian Medical Research Fund (APMRF).

Thanks to your support, we have made several great strides including the isolation of the NPC1 gene, understanding the NPC pathway and its role in transporting cholesterol in the cell, and now there are a number of potential life-saving therapeutics in clinical trials including ones that we hope to being the first approved therapy in the USA.

Today we know a great deal about the once-obscure disease, thanks to their courage, perseverance and commitment and because of you, our great supporters!

The Parseghian family lost the three children to NPC. However, with YOUR help, their fight continues to FIND A CURE for all of those other families and children facing this fatal disease.

Please Donate & Vote today for the APMRF as part of the Notre Dame Day competition.

Donate & Vote!

During the NDDAY competition, which lasts until April 29 at midnight, 100% of you donations & votes made to the Ara Parseghian Medical Research Fund at Notre Dame on our NDDAY webpage (this page!), will be used to support NPC research.

Why Vote? Votes are used to help determine the percentage of a $1.2 million Challenge Fund. To illustrate, if APMRF collects 2% of all votes throughout the contest, we will receive an additional $24,000 from the challenge fund. (If we collect 3%, then they will receive $36,000, etc.). We are competing with over 900 groups, and is why we need your help & votes!

PLEASE make a minimum of $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 $1,200,000 match!

Donating & Voting instructions are below:

Step 1) Make a minimum gift of $10 to the APMRF by clicking on the "Make A Gift" button or one of the giving levels.

Step 2) Follow the link & fill out the donation form.

(Do not leave yet! You need to vote!) After your gift is processed, you will receive five votes. Votes are used to help determine the percentage of a $1.2 million Challenge Fund.

Step 3) On the voting page, you can check the box for 'Cast all my votes where I just donated ' or search for the Ara Parseghian Medical Research Fund on the page and type in ‘5’ to make sure we receive all of your votes (It defaults as '1 vote' so please type in '5'). Then click on 'Cast Votes'

Step 4) You are done. Sort of! Every additional $10 gift is one vote so please continue to donate and vote.

Step 5) Please ask your friends and family members to give $10 to the APMRF through the contest website, and they will each receive 5 votes.

The more votes…the more of the challenge fund we will receive! All funds raised from your donations and the challenge fund will go to support our efforts to find a cure for NPC disease.

Road To Discovery--ESTEEM Legacy Project

The University of Notre Dame has raised funds and awareness for Niemann-Pick Type C (NPC) through a variety of fundraisers including the Road To Discovery bike ride. Originally started by Greg Crawford, the former Dean of Science at Notre Dame, the ride is now performed by students of the ESTEEM Masters of Science program at Notre Dame who have taken on this tradition for the past 4 years. During these rides we visited over 150 cities, held over 150 events, published a number of news stories and articles, and raised over $1.65 million for NPC disease research.

This spring, the ESTEEM students are again taking on the cause and organizing a three-day bike ride on May 13 - 15, 2019 that go from Notre Dame, IN to Michigan City, IN to Chicago, IL, and back to Notre Dame, IN. Learn more about the bike ride and how you can join us at https://parseghianfund.nd.edu/events/road-to-discovery-bike-ride

Both NDDay and the Bike Ride are part of the ESTEEM Program's Legacy Project. We thank them for their collaboration and their support of our efforts to find a cure for NPC disease.

Between the bike ride and NDDay our goal is to raise over $150,000 for the Ara Parseghian Medical Research Fund at Notre Dame. To help us hit our goal we need our goal will be to hit 5000 votes for NDDAY.

Please Donate & Vote today.