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 […]
Click to Read
$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 […]
Click to Read
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 […]
Click to Read
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 […]
Click to Read
Watch the Launch Meeting for International Consortium for FD/MAS
Foundation News Research NewsOn July 14th 2022, the International Consortium for FD/MAS (ICFDMAS) held a launch meeting open to all researchers, clinicians, and advocates. The meeting agenda included an introduction to the ICFDMAS, a presentation from the collaborating patient groups from around the globe, and updates on clinical and basic research in the field of FD/MAS. The meeting […]
Click to Read
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 […]
Click to Read Disability Benefits 102
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 […]
Click to Read
International FD/MAS Patient Groups Release Top Priorities for FD/MAS research
Advocacy NewsFOR IMMEDIATE RELEASE Washington, DC (July 14th, 2022) To the researchers and clinicians of the International Consortium for FD/MAS: Patient groups from around the globe including FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, EAMAS, FD/MAS Brasil, and GULI (FD/MAS) Care Center have collectively identified nine […]
Click to Read
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, […]
Click to Read
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 […]
Click to Read