“We are on the cusp of important advancements"
-Camryn Berry, FD/MAS patient and researcher

Now is the time to give to support FD/MAS Alliance

This giving season, we’re focusing on the story of Camryn Berry, a patient and a third year P.h.D. student researching pain mechanisms of fibrous dysplasia, McCune-Albright syndrome (FD/MAS).

Many patients with FD/MAS are diagnosed at a very young age, have visible physical asymmetry, and can feel overwhelmed with the medical complexity and social challenges of the disease. Camryn may relate to these obstacles, however she does not shy away from her own beauty. Serving as the face of this community is not just an inspirational cover story; Camryn embodies the idea of taking control of her narrative and making a positive difference.

We are the people most capable of advancing the research and treatment options available for those living with FD/MAS. Together, we can make a real difference.

Donating to the FD/MAS Alliance on Giving Tuesday (November 28) helps to create a strong community of care and a platform for patient advocacy, research funding, and more. We are the people most capable of advancing the research and treatment options available for those living with FD/MAS.

Our goal is to raise $100,000 by the end of the year to strengthen our community and to advance research and treatment. Please consider making a gift today because together we are better.

Support FD/MAS Alliance

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and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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

NIDCR Honors 25 years of FD/MAS Research

Immediately following the FD/MAS Community Conference, NIDCR hosted a symposium to celebrate the institute’s 25-year legacy of research to understand and treat fibrous dysplasia/McCune-Albright syndrome (FD/MAS) as part of its 75th anniversary. The event featured Nobel Laureate Brian Kobilka, M.D., who won the 2012 Nobel Prize in Chemistry for his work on G-protein-coupled receptors. The […]

Faces of FD/MAS: Camryn’s Story

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 fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. This giving season, we’re focusing on the story of Camryn Berry, an FD/MAS patient, and 3rd-year Ph.D. student studying […]

Camryn Berry’s Experience at the FD/MAS Community Conference

This giving season, we’re focusing on the story of Camryn Berry, a patient and a third year P.h.D. student researching pain mechanisms of fibrous dysplasia, McCune-Albright syndrome (FD/MAS). Camryn recently attended the FD/MAS Community Conference and shared a bit about her experience: I attended the Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS) Community Conference in September of 2023 […]

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

Giving Tuesday

This is a day to turn the abundance of the season towards philanthropy and to connect with the causes that are important to you.

The FD/MAS Alliance will be rallying our community to raise $100,000 by the end of 2023

Like you, we are eager to see advancements in treatment and research for people living with FD/MAS. Thanks to our dedicated community, we are building a promising future together. To advance this potential into reality, we need your financial support.

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 2024 we celebrate the fifth annual FD/MAS Global Awareness Week.

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!