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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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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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 Federal Research Funding Initiative
Advocacy News Research NewsThe FD/MAS community of researchers and advocates continues forward with the Department of Defense Funding Opportunity One of the most significant initiatives that FD/MAS Alliance continues to advance is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a major research opportunity that our team of advocates has unlocked for FD/MAS researchers through the […]
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Find Your Strength
FDMAS Awareness Week Patient Spotlight UncategorizedHello, I’m Sarah and I’m from Sacramento, California.I was diagnosed with McCune-Albright syndrome when I was about three years old. My mom was putting me down for bed and stroked my face when she noticed a strange lump on my jaw. From there, it took several doctors visits until I could get a CT to […]
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What’s your life motto?
Foundation NewsWhat’s your life motto? Mine is #KEEPGOING My name is Adrianna, but my friends call me Anna. I am from Columbus, Ohio, and the oldest of four kids. We are a super close family. We pray a lot and value our faith, and it is central to how we see hope in fighting a […]
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Researchers and Advocates Move Forward with Department of Defense Funding
Advocacy News Foundation News Research News UncategorizedOne of the biggest initiatives that FDF is working on right now is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a huge research opportunity that our team of advocates have unlocked for FD/MAS researchers through the US Department of Defense’s Congressionally Directed Medical Research Program (DOD CDMRP). Thanks to the tireless efforts […]
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I remember happily playing soccer, my dad remembers his son limping. A lot.
Foundation News Patient SpotlightWilliam Romero was just four years old when he was diagnosed with polyostotic fibrous dysplasia (FD). “As a child, I did not realize any of my symptoms other than the fact that I walked funny, but as I reached puberty, I started to feel more of the pain associated with FD.” But aches and pains […]
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Spotlight on Michael Collins, MD
Clinician Spotlight UncategorizedDr. Michael Collins is not just a champion of hope, he is a champion of action. As a globally renowned expert in the clinical care and treatment of fibrous dysplasia and McCune-Albright syndrome (FD/MAS), Dr. Collins has been a driving force for the FD/MAS patient community and for the Fibrous Dysplasia Foundation (FDF) since the […]
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