Niemann-Pick Type C families are the beating heart of the Parseghian Fund's mission and an essential element in its quest for success. Their unwavering courage, resilience, and determination in the face of the challenges posed by this devastating disease inspire us daily. These families provide critical insights into the daily struggles and realities of NPC, offering a unique perspective that guides our research and advocacy efforts. They are the living testament to the urgency of our mission and the profound impact NPC has on individuals and their loved ones.

NPC families can engage with the Parseghian Fund and other families in multiple ways:

Annual Conference: We invite all families to attend the Parseghian Fund's Annual Research Conference which is an opportunity to learn about the latest in NPC research and visit with NPC families, companies and resaerchers.

Newsletter: Join our database and you will receive electronic and paper newsletters and information on upcoming events.  Reach out to Jamie Boling at jboling1@nd.edu if you would like to subscribe.

Plan a fundraiser: There are multiple ways we can help you in planning a fundraiser to raise funds to advance NPC research. However, the best way is to use an annual matching program that the University of Notre Dame hosts every year throughout the month of April called Notre Dame Day.  You can plan your own fundraiser on the free platform and each individual gift will be matched.

Social Media: Follow the Parseghian Fund on social media for updates on families, research and events.  Links are at the bottom of this page.  

Data:  Data is critical to advancing research and the success of clinical trials. Consider providing patient data with the International Nieman-Pick Disease Registry. 

Family Foundations: There are many family foundations that the Parseghian Fund partners with. Click the link in the sidebar for more information.

By actively engaging with the Parseghian Fund, NPC families create a united front in the battle against this rare disorder. Their involvement, whether through fundraising, awareness campaigns, or participation in clinical trials, not only drives progress but also instills hope in the hearts of all involved. NPC families are the driving force behind our commitment to find a cure, and their collaboration remains indispensable to the Parseghian Fund's continued success in the fight against NPC disease.