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 five years,
Team FD/MAS has raised $675,000+ 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 Fibrous Dysplasia Foundation 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)!


Team FD/MAS Is Coming Together Virtually During COVID-19, and we invite YOU to be part of the
FD/MAS VIRTUAL TEAM in a show of unity and strength!

To learn more about joining as a virtual participant, with or without fundraising, click here. (One registration fee per family to participate doing ANY ACTIVITY - NO biking required!)

Can I donate or fundraise for this event?

YES! Team FD/MAS is committed to raising money for researchers to find a way to beat FD/MAS. 

We received a generous $20,000 donation to jump-start Team FD/MAS fundraising from Aurélie Lagneau and Association MASFD, the patient support group organized in France, and we are eligible for UPenn's match gift of up to $30,000.  All registration fees, as well as the incredible $20,000 gift from Association MASFD, will go directly to FD/MAS research grants through UPenn. Subsequent donations are split equally between the MDBR grants (50%) and the FDF (50%) to support our organization’s key programs and infrastructure. These include the FD/MAS Patient Registry to facilitate research and continued advocacy work to support FD/MAS research as part of the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP) to allow FD researchers to compete for $360 million of Congressionally-directed funding in 2020.

If you have any questions about your donation, call Executive Director Adrienne McBride, 301.467.8979, and she'll be happy to chat with you. 

PS. Many employers match charitable donations made by employees like you. Use this easy search tool to check if your employer will double your donation… or maybe even more! Click here for Matching Gift information. Be sure to reference or note Team FD/MAS in your gift so that your contributions are allocated appropriately. And thank you!

We are rare, but we are not alone, and we are determined to advance change.

Thanks to all who have already joined our roster for Team FD/MAS 2020:

Sue Barnicle
Tovah Burstein
The Corvelle Family
Suzie Doody
Dr. Ed Hsiao
Fred and Cindi Brandt Levin
Barry and Lori Offitzer
Adrienne McBride
Dr. Andrew Shenker 
Kiran Yarlagadda 




Make A Donation

Team FD/MAS 2020 Virtual Million Dollar Bike Ride for FD/MAS Research

by Fibrous Dysplasia Foundation


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 five years,
Team FD/MAS has raised $675,000+ 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 Fibrous Dysplasia Foundation 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)!


Team FD/MAS Is Coming Together Virtually During COVID-19, and we invite YOU to be part of the
FD/MAS VIRTUAL TEAM in a show of unity and strength!

To learn more about joining as a virtual participant, with or without fundraising, click here. (One registration fee per family to participate doing ANY ACTIVITY - NO biking required!)

Can I donate or fundraise for this event?

YES! Team FD/MAS is committed to raising money for researchers to find a way to beat FD/MAS. 

We received a generous $20,000 donation to jump-start Team FD/MAS fundraising from Aurélie Lagneau and Association MASFD, the patient support group organized in France, and we are eligible for UPenn's match gift of up to $30,000.  All registration fees, as well as the incredible $20,000 gift from Association MASFD, will go directly to FD/MAS research grants through UPenn. Subsequent donations are split equally between the MDBR grants (50%) and the FDF (50%) to support our organization’s key programs and infrastructure. These include the FD/MAS Patient Registry to facilitate research and continued advocacy work to support FD/MAS research as part of the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP) to allow FD researchers to compete for $360 million of Congressionally-directed funding in 2020.

If you have any questions about your donation, call Executive Director Adrienne McBride, 301.467.8979, and she'll be happy to chat with you. 

PS. Many employers match charitable donations made by employees like you. Use this easy search tool to check if your employer will double your donation… or maybe even more! Click here for Matching Gift information. Be sure to reference or note Team FD/MAS in your gift so that your contributions are allocated appropriately. And thank you!

We are rare, but we are not alone, and we are determined to advance change.

Thanks to all who have already joined our roster for Team FD/MAS 2020:

Sue Barnicle
Tovah Burstein
The Corvelle Family
Suzie Doody
Dr. Ed Hsiao
Fred and Cindi Brandt Levin
Barry and Lori Offitzer
Adrienne McBride
Dr. Andrew Shenker 
Kiran Yarlagadda