Road to Discovery 2017
In tandem with The University of Notre Dame, The ESTEEM Road to Discovery is raising awareness and funds for the Ara Parseghian Medical Research Fund (APMRF) at Notre Dame; an organization helping to fund research and awareness for Niemann-Pick Type C (NPC) disease – a rare, genetic cholesterol-storage disorder that primarily affects children. Follow our journey as we train for our 206-mile round trip cycle to Chicago. Learn more about the fund and the cyclists as we try to combat this disease one pedal at a time!
The students are actively seeking donations and welcoming all contributions. Scroll down to learn more about NPC, how to donate, and how to be involved with events in Chicago. Be sure to keep an eye out for upcoming Road To Discovery blog posts.
The APMRF and ESTEEM are seeking partners to support our efforts to raise awareness and funding for rare disease research, and we need your help. Please consider making a donation at one of the following levels:
Donations can be made through the link above, or checks can be made out to the University of Notre Dame. Please write "Ara Parseghian Medical Research Fund" in the memo. Checks can be sent to: Sean Kassen, 215 Jordan Hall of Science, Notre Dame, IN 46556.
Niemann-Pick Type C
Niemann-Pick Type C (NPC) is a rare and deadly neurodegenerative disease that primarily strikes children before or during adolescence. An inherited cholesterol metabolism disorder, NPC strikes one in every 150,000 children. Sadly, three of legendary Notre Dame football coach Ara Parseghian’s grandchildren were diagnosed with the disease. The family could have given up, but they did not. They sought to save their children’s lives by launching a foundation and most recently the Ara Parseghian Medical Research Fund. Since 1994, they have raised money to fund research, and today we know a great deal about the once-obscure disease, thanks to their courage, perseverance and commitment. They eventually lost the three children with NPC, Marcia, Christa, and Michael, but their fight continues to find a cure for all of those other families and children facing this fatal disease.
Road to Chicago
This year’s event is the 7th annual Road to Discovery bike ride, with over $1 Million dollars being raised in total over the years. This year’s goal is $75,000.
Please join us after the first 103 mile leg of our journey on May 16th in Chicago, IL at the Gage Restaurant from 5:30-8:00 PM. This reception is complimentary.
There is also an opppurtunity to ride 30 miles with the ESTEEM students from 2-5 PM, prior to the reception.This ride will be from Millenium Park to Hammond, and back to Millenium Park. A suggested donation of $300 is appreciated for riders. Those who make a gift will have the option of purchasing a Road to Discovery cycling jersey and bib for $150, with proceeds going to the APMRF.
You may register for the event and/or bike ride below.
If want to go beyond donation and collaborate or assist the students directly please feel free to contact us at firstname.lastname@example.org. The students welcome suggestions for equipment sourcing, promotion and fundraising.