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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Over, Under, Around, or Through
Patient SpotlightWhen 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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Global collaboration launches the International Consortium for Fibrous Dysplasia and McCune-Albright Syndrome
Advocacy News Foundation News Research News18 February 2022 Media Contact: info@icfdmas.com FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, and European Association for McCune-Albright Syndrome are announcing the launch of the International Consortium for Fibrous Dysplasia and McCune-Albright syndrome Ltd. (ICFDMAS). Fibrous dysplasia and McCune-Albright syndrome (FD|MAS) is a rare disease that […]
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Meet the International Consortium for FD/MAS
Foundation NewsFebruary 20th at 11:00 EST on Facebook live (even if you don’t have Facebook) The international Consortium for FD/MAS (ICFDMAS) will officially launch on 20th of February, 2022. The group has met informally since 2015 as a group of researchers, clinicians, and patient advocates from around the world. Over the course of these meetings, a consensus was […]
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Join Us: Community Film Screening and Discussion
FDMAS Awareness Week Patient SpotlightPacing the Pool 24th February, 2022 – 7:30 PM EST In honor of FD/MAS Global Awareness Week, FD/MAS Alliance invites you to join us along with special guest, Richard Pace, for a community meet and greet and discussion. The discussion will begin with a screening of Pacing the Pool – a short documentary film focused […]
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