$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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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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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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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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