Dear Friends in the NPC Community, The Ara Parseghian Medical Research Fund is excited to announce that, in collaboration with the organizations listed below, we will host the Niemann-Pick Type C (NPC) externally-led Patient-Focused Drug Development (PFDD) meeting. In late August, we submitted a Letter of Intent to the Food and Drug Administration (FDA) for approval to conduct this landmark … Read More
2018 Parseghian Cup!
For the past six years, the University of Notre Dame Men’s Rugby team has played the University of Arizona in an annual match called the Parseghian Cup. The team’s come together each year do the relationship the Parseghian family has with the Notre Dame family and the Tucson, AZ community (home to the Arizona Wildcats). The universities take turns hosting the event, and … Read More
Something’s Killing Me — NPC Disease Episode
Thank you to CNN for dedicating an entire episode of their series Something’s Killing Me toward investigating and unpacking NPC, telling the story of many NPC families and their fight to find a cure for this devastating disease. It aired on Sunday, August 19 at 8pm on the Headline News Network. We invite you to watch this impactful episode that … Read More
2018 Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research
On June 2-5 of this year, over 140 NPC researchers, clinicians, and family members gathered in Tucson, AZ for our annual Conference. The level of participation and collaboration was incredible during our time together. The conference kicked off with a keynote address by Dr. Thijn Brummelkamp, who spoke on genetic studies on the function of NPC1 in pathogen entry and cholesterol … Read More
Together Strong–Request for Proposals
I am excited to announce the Together Strong NPC Foundation will be accepting grant requests. The foundation was set up with three primary goals listed below: 1) NPC Science: Develop foundational science to benefit NPC patients; advance research and development projects that focus on discovery, identification of therapeutic targets, and improved diagnostics 2) Public Awareness and Advocacy: Enable stronger independent … Read More
2018 APMRF Grant Awardees
I am please to announce this year’s Parseghian Fund grantees. Thanks to the generosity of so many and the commitment of these scientists and clinicians the APMRF was able to fund 14 new projects that will help find a cure for NPC disease. The research projects listed below represent a variety of important areas including furthering our understanding of NPC … Read More
Rocky Bleier presents ‘The Play’ — a benefit for the APMRF
Please join Rocky Bleier and the Notre Dame class of ’68 at the DeBartolo Center on June 1 and 2 as Rocky presents his One Man show called, The Play. From Rocky Bleier, “The Play takes us back in time and is a story that touches all the iconic touchstones of our lives; The Civil Rights movement, Notre Dame, Vietnam … Read More
A Letter to our Supporters
We would like our supporters and the Niemann-Pick type C (NPC) community to see some of the amazing progress that is being made to positively impact the lives of those afflicted by this horrible disease. First, we thank all who support the efforts to find treatments and cure for NPC disease. It is the goal of the Ara Parseghian Medical … Read More
2018 Request for Proposals
The Ara Parseghian Medical Research Fund (APMRF) at Notre Dame (ND) is pleased to announce we will be accepting grant requests for the 2018 grant cycle. The mission of the APMRF is to promote research that furthers understanding of the molecular basis of Niemann Pick Type C (NPC) disease and targets development of novel strategies to treat and/or cure the … Read More
2018 Infiniti Coaches Charity Challenge–Fundraiser for NPC Research
The 2018 Infiniti Coaches Charity Challenge tipped off on January 2nd, 2018. 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
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