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)!

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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and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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

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 […]

FD/MAS Research Grants Announced

FD/MAS Alliance is thrilled to share that two FD/MAS research grants have been awarded from the 2022 Million Dollar Bike Ride! Last spring, Team FD/MAS raised $160,000 for FD/MAS-focused research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. After careful review of several applications by the FD/MAS Alliance’s Scientific Advisory Council and the […]

FD/MAS Global Awareness Art Competition

February 20th-27th is FD/MAS Global Awareness Week. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2023 we celebrate the fourth annual FD/MAS Global Awareness Week with the them #myFDMASlife […]

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 Research Update

2020 FD/MAS research grant recipients Drs. Ted Abel and Mara Riminucci will briefly explain the continued course of their FD/MAS research and the impact Team FD/MAS grants have on their work followed by a discussion led by Scientific Advisory Council Chair Dr. Michael Collins of the NIH.

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!

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).