Team FD/MAS Rides for Research!
Help us advance FD/MAS research in the UPenn Million Dollar Bike Ride

Team FD/MAS is Rallying to Support Research

Because 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 eight years, Team FD/MAS has raised over $1 million 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)!

Support Team FD/MAS

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Fibrous dysplasia, McCune-Albright syndrome

Fibrous Dysplasia (FD) and McCune-Albright syndrome (MAS) are rare, chronic diseases caused by a random, uninherited gene mutation on the 20th chromosome. FD presents as soft, malformed bones susceptible to fracture, chronic bone pain, and deformity. MAS is the combination of FD and abnormal hormone levels and/or rough-bordered birthmarks.

FD/MAS can surface in a sudden incident--an infant experiencing the onset of puberty or a toddler who unexpectedly breaks their femur during an otherwise routine activity. It could also be a gradual discovery, like observing a lump in the skull or a limp. Disease presentation can vary significantly from patient to patient; no two cases of FD/MAS are alike.

Due to the low prevalence and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions. Patients’ concerns may be dismissed or incorrectly diagnosed for years before a clinician with specialized expertise assesses the patient. People with FD/MAS can live full, happy lives, however, there is, as of yet, no FDA-approved treatment and no cure for the disease.

Fast Facts about FD/MAS

For Patients

For Researchers/ Clinicians

Latest

News

Faces of FD/MAS

How do you explain a disease that is so complex, varying, and rare? Through stories. Through narrative context. By giving the experience a face. About: Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the […]

Exciting Announcement: Researchers awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD)

Here’s some exciting news to share with families, friends, and donors! Researchers at Harvard School of Dental Medicine (HSDM) and Massachusetts General Hospital (MGH) awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD) HSDM, and MGH will receive just over $3 million for this study. “This funding will […]

FD/MAS Research Funding Opportunity & Webinar – PRMRP Information

The FD/MAS Alliance is alerting you to a 2023 funding opportunity: Fibrous dysplasia/McCune-Albright Syndrome was again named as one of the disease topic areas eligible for dedicated Department of Defense (DOD) research funding through the Peer Reviewed Medical Research Program (PRMRP). The mission of the PRMRP is to encourage, identify, select, and manage medical research […]

Join Our

Community

Often people reach out to the FD/MAS Alliance because they feel isolated and overwhelmed with the challenges, decisions, and emotions that come with their Fibrous Dysplasia/McCune-Albright Syndrome diagnosis. As a community, we go farther faster as we support each other in the journey. You are not alone.

FD/MAS Alliance relies on people just like you to fulfill our mission. Everyone can contribute something, and when enough people do, that’s when we are able to make a difference.

Events

Team FD/MAS and the 10th Million Dollar Bike Ride

Join Team FD/MAS as we raise funds to support FD/MAS research. This is our 9th year participating in the event and we've already raised over $1 million dollars for FD/MAS specific research. We won't stop until we have a treatment or cure!

Poster Exhibit Abstracts Due

The 2023 Fibrous Dysplasia/McCune Albright Syndrome (FDMAS) Alliance Research Poster Exhibit will be displayed in person throughout the 2023 FD/MAS Alliance Community Conference in Silver Spring, MD, September 8 -10. The poster exhibition will showcase researcher and advocate work to attendees, including clinicians, researchers, patients, families, and sponsors. All those involved in FD/MAS research and advocacy are invited to submit an abstract. Students and early career investigators have an additional opportunity to win travel funding by competing in the poster competition.

Septmeber 8-10th, 2023

FD/MAS Community Conference: Facing the Future - Together

We proudly invite you to the FD/MAS Community Conference: a weekend of education, connection, and collaborative research. The objective of this Conference is to combine patient-centered science and real-world strategies for patients and families living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS).