Past Events

Million Dollar Bike Ride 2016

The Million Dollar Bike Ride was held on May 7, 2016 and is the only fundraiser held in the United States that matches donations dollar for dollar for “Orphan” diseases like Niemann-Pick type C.

Team NPC is a group of dedicated families and friends who all know or love someone affected by Niemann-Pick type C disease. Along with the researchers studying the disease, we are raising funds for research that will lead to a treatment or cure for this devastating and fatal neurodegenerative disease. Our team participated again in 2016 in the Million Dollar Bike Ride and has funded four research projects since 2014 and 2015 successfully raising $50,000 each year. These funds have been matched by the University of Pennsylvania to $100,000 each year in 2014 and 2015. Totals for 2016 will be posted as soon as they are available.

Click here for more information on Team NPC

Vtesse Clinical Trial – For more information see the links below

As of July, 2016, Andrew and David continue visiting Chicago every two weeks as part of the Vtesse clinical trial. Since September, 2015 they have flown back and forth for treatments as part of the second phase of the Cyclodextrin trial. This study will continue for one year and will evaluate the effectiveness and safety of Cyclodextrin in patients with Niemann-Pick Type C1 disease. Two-thirds of the patients in the study will receive the actual drug and the remaining one-third will receive sham control.

It is estimated that only about 50 people will be included in this study so we are very thankful our sons are able to be part of this important research which began in October 2015.

For more information about this trial click here or here. For an informative video about the Vtesse trial and a glimpse of what Andrew and David go through every other week in Chicago, click here. While Andrew and David are not in this video, this is exactly what they experience.

The Beef & Beer was a Great Success!

Thanks so much to everyone who attended and all our volunteers for helping make the beef and beer such a huge success! We greatly appreciate every one of you!