Registration for the 2023 10th Annual Million Dollar Bike Ride (MDBR) IS CLOSED!
SETBP1 Society 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. This year’s event will be in person; however, there will be an option to fundraise and ride virtually. The event will take place in Philadelphia, PA on Saturday, June 8th. SETBP1 Society in partnership with the Schinzel-Giedion Syndrome Foundation is thrilled to have a team, SETBP1Strong, in this event 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 $15 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds raised goes towards these pilot grants, and every $1 raised is matched by the ODC, up to $30,000! 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.
Our goal again for this year is to raise $50,000 for SETBP1 haploinsufficiency disorder and Schinzel-Giedion Syndrome research. We need to raise a minimum of $20,000 for a research grant. All funds raised between $20,000 and $30,000 will be doubled by the Orphan Disease Center, which is AMAZING!! If we reach our goal of $50,000, then we will have $80,000 to dedicate to a combined research grant for SETBP1 haploinsufficiency and Schinzel-Giedion Syndrome!
Our SETBP1Strong Team will also need at least 15 in-person riders and/or volunteers! Registered riders need to be 16+ years old to ride or 18+ years old to volunteer at the event!
The SETBP1 Society has sponsored the SETBP1Strong team for the past 5 years. Check out the SETBP1-related research projects funded through the Million Dollar Bike Rides.
Event Details
WHEN: Saturday, June 8th, 2024
WHERE: Philadelphia, PA
You can ride in-person or virtually so you can show your support and ride anywhere you choose.
NOTE: 100% of fundraising will go towards SETBP1 research (for SETBP1 haploinsufficiency disorder and Schinzel-Giedion Syndrome)!
How to Join our Team
Options
Pick your preferred participation option:
- In-person Cyclist with Fundraising
- In-person Walker with/without Fundraising
- In-person Volunteer with/without Fundraising
- Virtual Cyclist with Fundraising/Virtual Fundraiser
- In-person Cyclist without Fundraising
FAQs
Q: Are there any graphics to share on social media to promote my fundraiser?
A: Yes, we have graphics available to support your personal fundraiser below. Click the image you want, right-click on it, and select save as to save it and use it as you prefer. You can add your child’s name to the one that has a blank spot.
