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Let's advance FD/MAS Research!

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Team FD/MAS Rides Again

In seven years, Team FD/MAS has raised over $900,000 for FD/MAS research in partnership with 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.

This peer-to-peer fundraiser is our search for a cure. It is the most direct way for the FD/MAS community to ask the most pressing scientific questions and fund the most promising therapuetic possibilities for a treatment. Team FD/MAS research fundraising is focused on developing a deeper understanding of the disease and finding better treatments (and someday a cure)!

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Latest

News

A Letter and a Call to Action from Mara

Hi! My name is Mara Watson, I’m 12 years old and this is my story. When I was one, I fell– like any toddler would–and couldn’t walk for a week. At that time, doctors looked at my bones and diagnosed me with a non-ossified fibroma, which means that, that bone had a small part of […]

FD/MAS and QOL

Study Examines FD/MAS and Quality of Life (QOL)

Quality of life (QOL)—we all seek it. For patients with fibrous dysplasia and McCune-Albright syndrome (FD/MAS), a life free of pain, anxiety, and depression is often overlooked in the task of day-to-day living.  Researcher Amanda Konradi, Ph.D., Associate Professor at Loyola University, Baltimore, Maryland, published three separate studies in 2021 related to QOL. All three […]

Over, Under, Around, or Through

When Fred Zeth was 8 years old, his parents were told he had cancer. “Take him home and enjoy him,” the doctors told the Zeths, “because he won’t last long.” It was the late 1950s, and none of the doctors in the greater Philadelphia area had ever heard of fibrous dysplasia or McCune-Albright syndrome (FD/MAS). […]

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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 this 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.

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Events

Million Dollar Bike Ride

FD/MAS Alliance is thrilled to share that three FD/MAS research grants have been awarded from the 2021 Million Dollar Bike Ride. With your participation, let's raise even more funds to award these important pilot grants!

Final Day for Team FD/MAS Fundraising!

This is the final deadline for collecing ALL Team FD/MAS fundraising. The money you raise will set the course for FD/MAS focused research for 2023. Every dollar raised can make a real difference!

FDMAS Patient Registry

FD/MAS Patient Registry Celebrates 5 Years!

The FD/MAS Patient Registry is an IRB-approved research study that invites the patients and families to help answer some of the biggest questions about FD/MAS by completing questionnaires about their lives with FD or MAS.

Have you enrolled in the FD/MAS Patient Registry yet? Are you up-to-date on your surveys? Take a trip to www.fdmasregistry.org today to learn more about the project, enroll, complete your surveys, or make sure you aren’t due to provide more info!

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