FD/MAS Alliance’s Fiscal Year 2022 Impact Report
Foundation NewsThe FY 2022 Annual Report outlines all the accomplishments that you and our community have made possible in the last year. These pages are filled with hope and with the faces of those who know that, because of the generosity of our donors, they are not alone, and better evidence-based treatments are possible. Your generosity […]
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Take the Lead: Optimizing Palliative Care
Foundation News Treatment NewsWhile not every person with FD/MAS has pain, many in the FD/MAS community do experience significant pain, and their concerns are not always taken seriously. Because of the varied responses that patients receive to their concerns, it’s important to understand the resources available for addressing FD/MAS-related pain. To explore this topic, we spoke to FD/MAS […]
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$160K FD/MAS Research Funding Available
Foundation News Research NewsWe are delighted to share the Request for Applications for this year’s Team FD/MAS Million Dollar Bike Ride grants: Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare multisystem disease caused by somatic mutations in GNAS. The mutation results in constitutive activation of the Gsα cAMP signaling pathway. Skeletal manifestations include bone pain, fractures, deformity, and […]
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Optimizing Your In-Person and Telehealth Visits
Foundation NewsHave you ever gone to a long-awaited medical appointment only to realize the provider isn’t familiar with fibrous dysplasia, McCune-Albright syndrome (FD/MAS)? Do you feel overwhelmed with health challenges, unsure which issue to address first, or how to tease one complaint out from the ways it affects the rest of your daily life and medical […]
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Disability Benefits 101 and 102
Advocacy News Foundation NewsWe’re pleased to share the recording of this 2 part workshop designed to help individuals with disabilities reach a greater understanding of some of the different government benefits available. These benefits are discussed in detail in clear, concise language, including how to qualify for, and the differences between, Supplemental Security Income (SSI), Medicaid, Social Security […]
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Meet the PAC!
Advocacy News Foundation News Patient SpotlightIn July 2022, FD/MAS Alliance launched our inaugural Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance. Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful. The community members who stepped forward to form this first class of ambassadors represent some of […]
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Research Article Emphasizes the Importance of Screening for Patients with FD/MAS for Pain
Foundation News Research News Treatment NewsPain in people with FD/MAS is common and can come and go. While not every person with FD/MAS experiences FD-related pain, every person who seeks help for FD/MAS pain should be taken seriously. Among many clinicians, there has been a longstanding and misinformed belief that FD/MAS does not cause pain. This idea has been refuted, […]
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Miss (and Ms.) Amazing
Patient SpotlightMeet Ellasyn Berry of Little Chute, Wisconsin. At 13 years old, she is a rollercoaster rider, a swimmer, a Bath & Body Works shopper, a future anesthesiologist, and living every day with McCune-Albright syndrome (MAS) and Polyostotic Fibrous Dysplasia (PFD). Ellasyn is surrounded by family that she lovingly describes as “chaotic.” Mom (Leah) works for […]
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Mouse Models, Research, and Hope
Research NewsWe had the pleasure of interviewing Yingzi Yang, Ph.D., Associate Dean for Research and Professor of Developmental Biology at the Harvard School of Dental Medicine. Dr. Yang is a leading scientist/researcher in skeletal biology and genetic disease studies and the recipient of a Team FD/MAS Million Dollar Bike Ride award. Dr. Yang received her B.S. […]
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2021 FD/MAS Research Funding Opportunity Announced
Research NewsWe’re thrilled to announce that research grants of up to $80,867 to study fibrous dysplasia or McCune-Albright syndrome are now available thanks to the work of Team FD/MAS in the UPenn Orphan Disease Center’s Million Dollar Bike Ride. The one-page letter of interest (LOI) is due Thursday, September 16th, 2021 by 8pm EST. Please read […]
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