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 […]
Click to ReadAn FD/MAS Community Webinar Series Launching in July
Foundation NewsIn July 2021 FD/MAS Alliance will launch 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 for sponsoring this series, and send our thanks to all […]
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THANK YOU to all who support TEAM FD/MAS
UncategorizedWe 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 News UncategorizedI 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?
UncategorizedHow 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
UncategorizedOne 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
UncategorizedPlease 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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COVID-19 and FD/MAS an Updated Conversation
UncategorizedOn March 12th FD/MAS Alliance hosted a COVID-19 and FD/MAS update from experts at the NIH and UCSF. Here are some major takeaways: Continue to look at guidelines from trusted sources such as the CDC for guidelines on travel, social distancing, and mask wearing All approved vaccines are safe for the FD/MAS community to take […]
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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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FD/MAS Awareness Week 2021
FDMAS Awareness Week UncategorizedFebruary 20th-27th is FD/MAS Global Awareness Week. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2021 we celebrate the second annual FD/MAS Global Awareness Week. Finding Your […]
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