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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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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Foundation NewsThis workshop is 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 Disability Income (SSDI) and Medicare. FD/MAS Alliance is […]
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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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International Consortium for FD/MAS Launch Meeting
Research NewsResearchers, clinicians, and advocates are invited to the International Consortium for FD/MAS Launch Meeting July 14th, 2022 at 13:00 – 16:00 GMT (9:00 – 12:00 EST) Please Register via this link.
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A Letter and a Call to Action from Mara
Patient SpotlightHi! 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 […]
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Study Examines FD/MAS and Quality of Life (QOL)
Treatment NewsQuality 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 […]
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