Bike Ride for a Cure raises funds for Niemann-Pick Type-C research and support

Author: Deanna Csomo Ferrell

Thirty-two students from the ESTEEM graduate program participated in the annual Bike Ride for a Cure in May, with proceeds going toward finding a cure for Niemann-Pick Type C disease.

Bike ride for a cure

The ESTEEM program at the University of Notre Dame has partnered with the Ara Parseghian Medical Research Fund (APMRF) since 2010 (with the exception of a break during the coronavirus pandemic). Beginning on May 8, cyclists began the ride in Grand Rapids, Michigan. They then rode to Coloma, Michigan; stopped again in South Bend, and took another break in Michigan City, Indiana, before ending in Chicago on May 11.  

This year, the ride raised more than $150,000, said Sean Kassen, APMRF director.

ESTEEM and Parseghian Fund bike ride 2022

“I think what is great about the bike ride is that it is an opportunity for the students to learn what it takes to put on a fundraiser and the work that is involved,” Kassen said. “At the same time, it is an opportunity for us at the Parseghian Fund to learn from the students as they bring new and innovative ideas to our fundraising efforts.”

Combined with donations given on Notre Dame Day, the APMRF and the ESTEEM program raised over $1.7 million this year, which provides funds beyond supporting research. Some of the funding will support efforts to ensure patient access to therapies, and some will assist with smoothing the path for current and future therapies to receive approval from the FDA and other agencies.

The ride itself is not only grueling—requiring weeks of training for the 32 students and one parent who participated—but was logistically challenging.

Riley Ellingsen, ’22 M.S., assisted with team training and coordinated the outdoor training rides this spring. He also worked with Allen Utterback, assistant director of facilities for the College of Science, to coordinate the headcounts and transportation logistics for the riders on each of the days of the ride. 

“For training, we typically did one shorter HIIT spin workout and one longer steady-state ride per week at the beginning; once the weather improved and the bikes became available, we started going on outdoor training rides,” Ellingsen said. “I typically led two to three, 15-to-25 mile rides per week, and a few longer, 40 to60 mile rides on the weekends, and the bikes were available at all times for others to ‘check out’ at will.”

During the various stops, the group met with APMRF founder Cindy Parsgehian, as well as David Murphy, assistant provost at the University of Notre Dame and executive director for student entrepreneurship and the ESTEEM program; Santiago Schnell, William K. Warren Foundation Dean of the College of Science, and Alec Koujaian, a patient with NPC disease. Alec specifically spoke to the challenges of living with the disease, and the impact it has on his family, including the loss of his sister two years ago to the disease.

Women on bikes for ESTEEM and Parseghian Fund bike ride

Niemann-Pick is a rare, inherited disease that affects the body's ability to metabolize cholesterol and other lipids within cells. These cells die over time. The disease affects the brain, nerves, and other internal organs, and is always fatal. 

Gregory Crawford, former dean of the College of Science, conceived of the bike ride in 2010 when he decided to bike across the country. Each year, until he departed the University in 2016, he set out on a new route. Even after he departed Notre Dame in 2016, the ESTEEM program carried on this tradition. Since 2010, the ride ​​has visited over 150 cities, held over 125 events, and raised over $2.5 million for NPC research.

ESTEEM confers a master of science degree that aims to build entrepreneurial confidence in students while instilling a sense of purpose for the common good.