Thought Leadership: Legacy Ride

Author: Anderson, Mohra

ND Day 2023ND Day 2023

Since 2016, the ESTEEM Program cohort has participated in the Ara Parseghian Medical Research Fund’s Bike Ride for a Cure. The bike ride occurs annually over the course of three days in the beginning of May. ESTEEM students assist in fundraising, organizing routes and uniforms, and training riders for the three-day event. The Ara Parseghian Medical Research Fund (APMRF) was established in 1994 after three of Ara Parseghian’s grandchildren (Michael, Marcia, and Christa) were diagnosed with Niemann-Pick Type C (NPC) disease. 

Niemann-Pick Type C is a progressive, neurodegenerative disorder that afflicts the nervous system primarily in children. NPC occurs due to one’s inability to transport lipids (fats such as cholesterol) within the body. When children are unable to metabolize cholesterol, it builds up in the spleen, liver, and brain. This accumulation of cholesterol causes neurological issues that ultimately lead to the child's death. NPC currently affects less than one in 150,000 people in the world

Rare disease research often struggles to find funding. Coach Parseghian’s daughter, Cindy and her husband, Mike launched the Parseghian Research foundation to fund research on treatments and cures for NPC. In 2010, Notre Dame and the Parseghian Research Foundation solidified their partnership starting with a 2,300-mile “Desert to Dome” bike ride. For the next five years, Dr. Greg Crawford headed the “Road to Discovery” bike ride for the fund, raising upward amounts of $150,000. 

When Dr. Crawford retired his bike, the ESTEEM cohort partnered with APMRF as their ‘legacy project.’ The Legacy Project is an ESTEEM tradition for which each cohort chooses a cause or fund to which they devote their time and energy during the program. This year, the cohort will bike 300 miles to raise money for APMRF. Starting in Indianapolis, ESTEEM will bike on average 100 miles a day through Lake Wawasee, Michigan City, and end in Chicago. APMRF, ESTEEM, and friends will celebrate with one last night of fundraising before ending the ride. 

ESTEEMers have been training three times a week in the student gym since January and have increased mileage outside on road bikes in the past month. To date, the cohort has biked over 6,100 miles in total. This ND Day, any donations made will be matched at a 3:1 rate. Please consider donating to the cause or pledging per mile for our bike riders!