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!
- Register to be on Team FD/MAS (one fee covers your whole family) by completing the form on UPenn’s 2020 MDBR page. Registration is $45 for non-fundraisers. 100% of Registration Fees go to the MDBR grant for FD/MAS research
- This year, no biking is necessary to participate! Pick ANY activity (walking, yoga, painting, or anything you choose!) to “train” for in prep for June 13th. You can track your progress and follow “weekly challenges” and “training tips” with UPenn!
- Join UPenn for a Zoom event on June 13th and celebrate Team FD/MAS progress. There will be a Team FD/MAS Social Zoom for all team participants as well as a UPenn Zoom event. We can’t wait to meet you and share our stories, hopes, and ideas!
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 MASFD Association, 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 the Fibrous Dysplasia Foundation, Team FD/MAS, or this event, email Executive Director Adrienne McBride, firstname.lastname@example.org, and she’ll be happy to chat with you.
We are rare, but we are not alone, and we are determined to advance change.
Many Thanks to All Our Supporters:
* denotes those who have registered for Team FD/MAS 2020
Fred and Cindi Brandt Levin*
The Corvelle Family*
Dr. Ed Hsiao*
Mary Ann Lukas-laskey
Barry and Lori Offitzer*
Ziv and Orit Rozenblum
Dr. Andrew Shenker*
Kiran Yarlagadda *