IRFU And University Of Notre Dame Announce Rugby Partnership

The Irish Rugby Football Union and University of Notre Dame have agreed a ground-breaking partnership to promote and develop rugby at Notre Dame and consequently across the United States.  You can read more at The Notre Dame Rugby team has been a longstanding supporter of APMRF by hosting the Parseghian Cup, an annual Rugby match between Notre Dame and the … Read More

Adam Recke Crowned Homecoming King

Adam was diagnosed with NPC in 2006.  Since then his family has been fighting for a cure.  Of recent, his classmates at Freedom High in Bethlehem, PA chose as the homecoming king.  You can read more at: You can learn more about Adam and his family at The Race For Adam

Greg Crawford president of Miami University (Ohio)

Greg Crawford

Thank you and congratulations to Greg and Renate Crawford. Greg has begun his role as the 22nd President of Miami University (Ohio), which is the Alma Mater of Coach Parseghian. Greg was a key supporter of the APMRF, and dedicated his summers to the Road To Discovery Bike Ride where he cycled across the country 5 times to raise money … Read More

2016 Parseghian Classic

Parseghian Classic Golf Event

The 5th Annual Parseghian Classic was held at Pebble Beach Resorts in California. With over 60 golfers and 120 total guests, plus special performances by singer/songwriter Isabela Nanni and comedian Henry Cho, it was truly one of the most fun and meaningful events of the year and also raised a lot of money for NPC research efforts. Thank you to … Read More

Andrew and Dana Marella

Andrew and Dana

From the age of five, it was apparent that the Marella’s daughter Dana, a happy, caring and energetic child, had visual and learning difficulties. After years of searching for answers to her challenges, Dana was diagnosed in 2002 at the age of eight with Niemann-Pick type C disease. In 2004, at the age of 5, Dana’s brother Andrew, the Marella’s … Read More

Conversation with CEO of Vtesse about Niemann-Pick Type C

Vtesse CEO

Recently, Vtesse announced they had secured $17 million in additional funding to support their ongoing pivotal clinical trial of VTS-270 for treating Niemann-Pick type C1 disease. We talked to the CEO of Vtesse, Ben Machielse, about the study and the horrific impact this disease can have on a family. Read the full story here.

A Newborn Screen for NPC

Newborn Screen

A Washington University School of Medicine-led research team has developed a mass spectrometry-based screen for the cholesterol storage disorder Niemann-Pick disease type C in newborns. Read the full story here.

Novel Drug Delivery System May Offer New Hope

Novel Drug Delivery System

Researchers at Oregon State University and other institutions have discovered a type of drug delivery system that may offer new hope for patients with Niemann Pick Type C1 disease. No treatment currently exists for the disease, however, a compound that shows promise is now undergoing clinical trials, but it has major drawbacks. New findings, published today in Scientific Reports, outline the … Read More

A Race for Adam Recke

A Race for Adam

The Race for Adam Foundation, a volunteer non-profit organization dedicated to funding research projects to find a treatment and cure for Niemann-Pick Type C disease (NP-C) and related neurodegenerative disorders, began in 2005.  In July of that year, Sean and Amy Recke’s seven-year old son, Adam, was diagnosed with NP-C, a genetic neurodegenerative disorder for which there is no cure.  … Read More