Hoffnungsbaum and Team BPAN Germany contribute to the success of the Million Dollar Bike Ride

from | July 27, 2020

This year saw the seventh edition of the charity bike race organized by the University of Pennsylvania in Philadelphia in the USA, the Million Dollar Bike Ride 2020The event was held under difficult conditions. It serves to collect donations for research into rare diseases, which were represented by 40 organizations this year. The NBIA variant BPAN was organized for the fourth time by our partner organization NBIA Disorders Association (NBIA DA) in the USA. In recent years, US$ 320,000 has already been raised for BPAN research.

The coronavirus crisis forced the organizers to move the event, which was originally planned for June 13, 2020, into virtual space so that everyone worldwide could participate from home. To this end, Markus Nielbock, Second Chairman of Hoffnungsbaum e.V.founded the BPAN Germany team. This resulted in our call at the beginning of June to support us in the campaign.

The goal of the Million Dollar Bike Ride was to raise between US$ 20,000 and US$ 30,000 with all participants in the remaining weeks until the finale on June 13, 2020. The University of Pennsylvania is doubling every dollar raised through sponsorship. 26 cyclists and 10 families participated in the fundraising for BPAN with their own online donation pages in addition to the NBIA DA central donation page.

Video: Amber Denton, https://spark.adobe.com/video/bBqihUiA1rjHJ

Thanks to the overwhelming support of many people from German-speaking countries, Team BPAN Germany raised US$ 2,500 in this short period of time. This success was crowned by the fact that the total sum of US$ 30,000 that had been hoped for was actually exceeded. Following an international call for proposals by the Orphan Disease Center (ODC), a research grant for BPAN in the amount of US$ 71,471 was awarded to the University of Groningen (Netherlands). A team of researchers there will investigate the causes of disorders of certain processes in cells affected by BPAN, thus contributing to a better understanding of how BPAN develops: https://www.movementdisordersgroningen.com/en/news/grant-awarded-to-study-bpan-pathology.

Milly and Laurin were on the road for BPAN research!
Photos: Markus Nielbock, Noah Rusch

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