10 years of Team FD/MAS

Team FD/MAS is Rallying to Support Research

FD/MAS Patients Need and Deserve Better Treatments  

Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and debilitating disease without an 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 TEN 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)!

Learn more here!

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and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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

PRMRP Information Session

FD/MAS was again named one of the disease topic areas eligible for dedicated Department of Defense (DOD) research funding through the Peer Reviewed Medical Research Program (PRMRP). Researchers have already been successful securing significant funding from this program and it is our goal to see that more FD/MAS research moves forward with DoD funds. To that end, we have scheduled a webinar for all interested researchers to meet with PRMRP program staff:

FD/MAS Community Social for Caregivers

Join us for a community social specifically focused on connecting FD/MAS caregivers hosted by Board Treasurer Chris Guest and FD/MAS Advocate Gina Mumper.

Team FD/MAS and the Million Dollar Bike Ride

Join Team FD/MAS as we raise funds to support FD/MAS research. This is our 10th 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!

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