A Father’s Strength
Guest Spotlight Patient SpotlightIn light of the sudden passing of Scott Mumper and as a way to honor his spirit, we now share his powerful reflection on parenting someone with FD/MAS. His words inspire us and we hope they inspire you too. Our thoughts and prayers are with his family at this difficult time. Your daughter has McCune-Albright […]
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Bone Pain and Fibrous Dysplasia, McCune-Albright syndrome (FD/MAS)
Treatment NewsIn July 2021 FD/MAS Alliance launched a monthly webinar series, live-streamed and available for free. Topics will range from medical education to more specific research updates, and will also include social topics of particular interest to the community. We are especially grateful to IONIS, Ultragenyx, and our Charlie’s Angels giving circle for supporting this series. These […]
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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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An FD/MAS Community Webinar Series
Foundation News Treatment NewsIn July 2021, FD/MAS Alliance launched an ongoing monthly webinar series, live-streamed and available for free. Topics range from medical education to more specific research updates and include social topics of particular interest to the community. We are especially grateful to IONIS, Ultragenyx, and our Charlie’s Angels monthly giving circle for supporting this series. We […]
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THANK YOU to all who support TEAM FD/MAS
Research NewsWe are so grateful to the FD/MAS community, donors, and riders for the Annual Million Dollar Bike Ride sponsored by Penn Medicine Orphan Disease Center for supporting 2021 Team FD/MAS! These gifts and registration fees directly fund FD/MAS research grants and support FD/MAS Alliance’s mission to advocate for research for evidence-based treatments for those living […]
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A Message from Lauren Foster, Patient Advocate
Advocacy News Constant Contact Foundation NewsI stand by Team FD/MAS and here’s why: WE matter. Our health matters. Some people don’t realize that if we donate the price of a meal at McDonald’s, we help find a cure. As an FD/MAS patient, I’ve struggled with this disease every single day of my life, as I know so many of you […]
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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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The ABCs of FD/MAS
Patient SpotlightOne parent’s tips on how to talk to adults about your child’s FD/MAS diagnosis* The first time I took my daughter to her best friends’ house for a playdate I gave her a kiss and told her to be careful and follow the rules, because she already knew her limitations and how to keep herself […]
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A Farewell to an Unmatched Leader
Foundation NewsPlease join us in thanking Dr. Andrew Shenker as he steps down from his role on the FD/MAS Scientific Advisory Council (SAC). Dr. Shenker was part of the team that discovered the gene mutation that leads to FD/MAS and has served as SAC chair for over two years. He truly raised the bar for SAC […]
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