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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A Better Method for Detecting the Risk of Vision Loss in Craniofacial FD
Foundation News Research News Treatment NewsOptic neuropathy or vision loss is a major concern for people with craniofacial fibrous dysplasia (FD). Because surgical correction can lead to further complications, management and treatment for FD related vision loss has been a challenge and source of debate for decades. A previous study found that FD lesions closing around the optic canal rarely […]
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How close are we to developing a drug to treat FD/MAS?
Research NewsHow close are we to finding a treatment for FD/MAS? An audience member posed this question in a recent update from 4 researchers funded by Team FD/MAS, and the answer? It depends. Because of your generosity, the last few years have been a real breakthrough for FD/MAS. Team FD/MAS has been partnering with the […]
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FD/MAS Alliance and UPenn ODC Award the 2020 FD/MAS Research Grant
Foundation News Research NewsWe’re thrilled to share the news that the 2020 Team FD/MAS Million Dollar Bike Ride Research Grant has been awarded to Dr. Mara Riminucci for her project entitled: Osteoclasts and Pain in Fibrous Dysplasia: Investigating and targeting the molecular links in a transgenic mouse model (EF1α-GsαR201C mice) of human fibrous dysplasia Dr. Riminucci will receive […]
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FDF and UPenn ODC Award Two FD/MAS Research Grants
Foundation News Research NewsThe Fibrous Dysplasia Foundation and the University of Pennsylvania Orphan Disease Center are pleased to announce the winners of the 2019 Million Dollar Bike Ride research grants. These important seed grants pave the way for new, innovative research to investigate fibrous dysplasia and McCune-Albright syndrome (FD/MAS). This year’s awardees are: Dr. Yingzi Yang of the […]
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Fibrous Dysplasia Included in the Department of Defense Appropriations Bill
Advocacy News Foundation News Research NewsWashington DC (December 20, 2019) Fibrous Dysplasia Included in the Department of Defense Peer-Reviewed Medical Research Program We are grateful for the support of the Chairs and Ranking Members of the Appropriations Committee and the Defense Appropriations Subcommittee, the individual members on the Subcommittee and the Senators, as well as their staff. Thanks to their […]
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Join Us for the Inaugural FD|MAS Global Awareness Week: February 20-27
Advocacy News Foundation NewsFibrous Dysplasia Foundation, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, Eamas, and MASFD of France are announcing the first annual FD/MAS Global Awareness Week, between the 20th and 27th of February, 2020. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and […]
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