CHI is pumped to announce that once again we will be participating in the first Million Dollar Bike Ride sponsored by The Penn Medicine Orphan Disease Center on May 7, 2016. This event will raise awareness of rare diseases while raising funds for rare disease research. Our team, the “Raring to Go for CHI” team will raise funds for congenital hyperinsulinism research. The Orphan Disease Center will match up to $50,000, so this is really a fantastic opportunity to raise funds for research. This summer there will be a request for proposals from the Orphan Disease Center and researchers from all over the world will be able to apply for the funds we raise on May 7. The Orphan Disease Center will fully administer the grant. All money raised goes directly to the grant. All administrative fees are being paid for by the Orphan Disease Center out of their own budget. 100% of the funds we raise will go to the researcher selected for the grant.
CHI has funded two excellent research projects by riding and fundraising. Last year the CHI research grant was awarded to Dr. Mark Dunne of the University of Manchester for a project entitled: Towards Precision Medicine in the Treatment of Congenital Hyperinsulinism in Infancy. In the inaugural year, the CHI research grant was awarded to Dr. Diva De Leon of the Children’s Hospital of Philadelphia for a Pilot Study of the Efficacy and Safety of Sirolimus in the Treatment of Congenital Hyperinsulinism.
Our team will be riding alongside many other wonderful teams. By riding with our counterparts, we will also deepen our connections to other rare disease groups. The purpose of the Orphan Disease Center/CHI Research Fund is to encourage innovative, pre-clinical or clinical studies designed to improve the diagnosis, therapy, or quality of life for those affected by congenital hyperinsulinism. The grant will be awarded to a researcher anywhere in the world, to initiate or augment a scientific, pre-clinical or clinical research study, the results of which could be used to obtain future funding from NIH, FDA or other international funding agencies, or to attract a corporate sponsor. Evaluation of proposals will include careful consideration of value to the patient population, protocol design, objectiveness of parameters measured, and statistical evaluation proposed.”
The name of our team is “Raring to Go for CHI.” Each team has a captain. Our captain is the fantastic Leo Brown. Born with congenital hyperinsulinism, Leo is a wonderful young man in his twenties who is graduating from Harvard University’s School of Public Health. Leo is also the creator of the Nutrition Algorithm, https://www.thenutritionalgorithm.com , a website that takes your diet and fills in the gaps to meet your nutrition needs within your budget. You must check it out. But before you do, read the instructions below about how to sign up for the Million Dollar Bike Ride “Raring to Go for CHI Team.” It looks complicated but is actually quite easy. Here is the link to Leo’s Instructions: The-Million-Dollar-Bike-Ride-Raring-to-Go-for-CHI-Sign-Up-Instructions. Here is a link to instructions from the Orphan Disease Center: How to create your fundraising page MDBR.