FD/MAS Alliance Welcomes Camryn Berry, Ph.D. to Board of Directors
Foundation NewsPatient Advocate and Researcher Continues Commitment to the FD/MAS Community FD/MAS Alliance is thrilled to announce that Camryn Berry, Ph.D., has been elected to our Board of Directors. Camryn is a postdoctoral research fellow in the Department of Anesthesiology, Critical Care and Pain Medicine at Boston Children’s Hospital and Harvard Medical School, where she studies […]
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Share Your FD/MAS Story
Foundation NewsLiving with a Rare Disease Can be Isolating Sharing your journey with fibrous dysplasia and/or McCune-Albright Syndrome can be both uncomfortable and liberating; but knowing it may provide hope to others oftentimes is the key motivation to being so open. That’s why FD/MAS Alliance thinks it’s important to share real stories of the real people […]
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Fall 2026 FD/MAS Research Update
Research NewsFD/MAS Alliance Research Update Featured a Study on Pain in FD/MAS The FD/MAS Alliance hosted a virtual research update with featured speaker Dr. Jaymin Upadhyay of Boston Children’s Hospital. The session included a review of Dr. Upadhyay’s pilot study supported by the FD/MAS community on pain in fibrous dysplasia and McCune-Albright syndrome, as well as […]
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Inspiring Artwork Needed to Represent the FD/MAS Journey
Foundation NewsThe FD/MAS Alliance is seeking original artwork that reflects the real-life experiences, resilience, and strength of individuals living with fibrous dysplasia and McCune-Albright syndrome. As a patient-centered organization, we are committed to spotlighting the voices and journeys of our community members. Following the success of our 2025 Annual Report, the selected art will be featured […]
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Deep Thanks from Team FD/MAS 2026 and the UPenn Orphan Disease Center’s Million Dollar Bike Ride
Foundation NewsWe’re thrilled to share that Team FD/MAS has raised $28,161.07 through the generosity of 103 donors, and donations continue to come in. Special thanks are owed to Cindi Brandt Levin, our dedicated Team Captain and the visionary who saw that an organized community can change the trajectory of rare disease research and treatment. Levin shared […]
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Meet the Newest Member of the FD/MAS Alliance Team!
Foundation NewsFD/MAS Alliance is excited to welcome Lori Butterfield, our new Program Coordinator joining the team in July. Lori has 25 years of experience in the nonprofit sector, where she has worked alongside dedicated professionals and volunteers at a variety of medical advocacy and research organizations. Over the past eight years, she has focused on developing patient […]
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US based Advocates Needed, July 9th, 2026
Advocacy NewsCornerstone to FD/MAS Alliance’s vision for a world where everyone with fibrous dysplasia, McCune-Albright syndrome (FD/MAS) can thrive is our work advance research and advocate on behalf of the FD/MAS community. That’s why I am calling for advocates to address a pending executive order (OMB-2026-0034) that would have a significant impact on research, and public […]
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“I make time for this” -Anne Corvelle
Foundation NewsBecause I know this is important I am a single mother of two daughters. One of them, Katie, has McCune-Albright Syndrome, and that diagnosis has changed all of our lives. This school year alone: 30 appointments, 11 specialists, and a 13-year-old carrying exhaustion no child should know. Her older sister Lily manages college applications and […]
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FD/MAS Research Priorities Workshop: Recap
Research NewsCommunity and Science Came Together at the FD/MAS Research Priorities Workshop May 2, 2026 • Philadelphia, PA Patients, caregivers, clinicians, academic researchers, and pharmaceutical scientists gathered in Philadelphia for a landmark day, dedicated entirely to charting the future of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) research. The FD/MAS Research Priorities Workshop, organized by the FD/MAS […]
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2026 FD/MAS Community 24 Hour Open Office
UncategorizedIf you’ve ever met someone who shares your rare disease diagnosis, you know how moving the experience can be. As the Patient Advisory Council planned for FD/MAS Global Awareness Week in 2026, we wanted to create an open opportunity for as many people in our community as possible to connect with others and access resources. […]
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