Join Team FD/MAS 2021

FD/MAS Patients Need and Deserve Better Treatments  

Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and debilitating disease that has no FDA-approved treatment. It causes fibrous tissue to grow in place of healthy bone and often causes chronic pain, loss of mobility, hormonal imbalances, skin marks, deformity, and more. There is no cure and no way to slow the disease down.

In six years, Team FD/MAS has raised almost $750,000 for FD/MAS research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride (MDBR) thanks to Team Captain Cindi Brandt Levin, the Levin family, the FD/MAS Alliance, and the FD/MAS community. These research grants are focused on developing a deeper understanding of the disease and finding better treatments (and someday a cure)!

Learn more about previous Team FD/MAS awardees here.

Team FD/MAS 2020
Coming Together Virtually During COVID-19

We want YOU to join us on Team FD/MAS

Register to be on Team FD/MAS by completing the form on UPenn's 2020 MDBR page. Registration is $45 for non-fundraisers ($25 for fundraisers who raise at least $250). 100% of registration fees go to the MDBR grant for FD/MAS research.

No biking is necessary to participate! You can simply register to show your support without participating in any activity or event. We want as many people registered as possible to help us advance FD/MAS research. If you are interested in joining the team and "training" you can pick ANY activity (biking, walking, yoga, painting, or anything else!) and track your progress. Team FD/MAS members who want to "train" can follow “weekly challenges” and "training tips" with UPenn!

On June 12th, the Orphan Disease Center will host a virtual program starting at 11 am EDT, to include messages from the rare disease teams, Orphan Disease Center staff, UPenn leadership, and more! For those interested in participating in the cycling part of this event, at 12 pm EDT, pro cyclist Nikki Thiemann will host a live 45 min spin class! Hop on your stationary bikes and join us for a challenging and energizing virtual ride in solidarity with the rare disease community!

Register to Join Team FD/MAS
Can I donate or fundraise for Team FD/MAS?

YES!

You can donate or start your fundraising page here.

All registration fees will go directly to FD/MAS research grants through UPenn. Subsequent donations are split between the FD/MAS research grants (80%) and the FD/MAS Alliance (20%) to support our organization’s key programs and infrastructure. These programs include the FD/MAS Patient Registry to facilitate research, and continued advocacy work to unlock potential monumental FD/MAS research funding as part of the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP).

If you have any questions about the FD/MAS Alliance, Team FD/MAS, or this event, email Executive Director Adrienne McBride, amcbride@fibrousdysplasia.org, and she’ll be happy to chat with you.

Support Team FD/MAS Research