Road To Discovery 2016

Discovery Begins

 
 
 
 

Overview

r2d_header_imageStudents of the ESTEEM program in collaboration with the College of Science are organizing a four-day bike ride from May 8th to 11th, 2016 with a goal of raising $150,000 for Niemann-Pick Type C (NPC) and rare disease research. The 350 mile bike ride will begin in Louisville, KY. on May 8th and conclude in South Bend, IN. on May 11th.

The students are actively seeking donations and welcoming all contributions. Scroll down to learn more about NPC, how to donate and be sure to keep an eye out for upcoming Road To Discovery blog posts. You can also follow the team on Facebook, please like and share to spread the word.

The College of Science is 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:

• A donation of $10/mile $3500
• A donation of $1/mile $350
• A donation of $.10/mile $35

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 the Ara Parseghian Medical Research Foundation. 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, Christy, and Michael, but their fight continues to find a cure for all of those other families and children facing this fatal disease.

The University of Notre Dame formed a partnership with Ara Parseghian Medical Research Foundation to fund NPC research. At the same time, the university of Notre Dame and their collaborators have made tremendous progress against NPC. There are currently over eight faculty members at Notre Dame conducting NPC research, and they have developed a promising treatment discovered by medicinal chemistry Professor Paul Helquist and his collaborators that is in FDA clinical trials. Now, the University is poised to launch the Ara Parseghian Medical Research Fund that will take on the roles and responsibilities of the Foundation and drive the Foundation’s research efforts to find a cure.

Beyond Donation

If want to go beyond donation and collaborate or assist the students directly please feel free to contact us at poweredbyesteem@gmail.com. The students welcome suggestions for equipment sourcing, promotion and fundraising. 

 

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