SETBP1 Strong

SETBP1 Society, the Schinzel Giedion Syndrome Foundation and the University of Pennsylvania Orphan Disease Center invite you to participate in the Million Dollar Bike Ride. This annual festival brings together rare disease families, friends and supporters to raise funds for rare disease research and to spread awareness of rare disease. The event will take place in Philadelphia, PA on Saturday, June 8th. Our SETBP1Strong will ride again for the 6th time!

The Million Dollar Bike Ride brings together rare disease teams, each representing a specific rare disease. The money raised by each team funds one or more research grants to study that specific disease. The Million Dollar Bike Ride brings over 750 cyclists and volunteers to Penn’s campus to ride either 13, 34, or 72 miles starting in the city, and ranging across the Greater Philadelphia region. In eight years, the MDBR’s 30+ teams have raised over $14 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds raised goes towards these pilot grants, with no overhead taken out, excluding platform fees. After the event, grant applications will be open to the international scientific community — scientists from around the world will be eligible to apply.

This is a unique opportunity for the entire SETBP1 community (families affected by SETBP1-HD, SETBP1-related disorders, and Schinzel-Giedion Syndrome) to work together. It is also an extraordinary opportunity to join with other rare disease patients and organizations.