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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Your gift changes lives
Constant Contact Foundation NewsGiving Tuesday, December 2, 2020, was very exciting as the FD/MAS Alliance launched Charlie Harles’ Angels, our new monthly giving society, in honor of our founder, Charlie Harles! We’ve added new monthly donors to our ranks today, increasing our overall monthly giving pledges to over $1,800, which provides a foundation of support for people living […]
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With thanks AND a 10:1 Challenge
Foundation NewsWe have reflected on many things, for which we are grateful. One of those things is the FD/MAS Alliance community. When our son, Jonathan, was diagnosed with this rare disease, it was devastating. It’s still difficult even now. But we have found hope knowing there is an organization helping other families like ours and supporting […]
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Rare and Black: FD/MAS and Racial Healthcare Disparities
Foundation News Patient SpotlightWhen Malajisa was five, her mother, Leslie, noticed that she ran differently. “She was a happy kid and nothing about her looked different,” Leslie recalls, but as she continued to go through growth spurts, that funny run became part of her walk as well. Leslie brought the issue up with Malajisa’s doctor at a regular […]
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Brighten the Corner Where you Stand: Remembering Ann Molitor
Foundation News Patient SpotlightIn 1954, Ann Molitor found herself living alone in Seattle. Her first marriage had come to an end, and she was starting again on her own. To cheer herself up, she would light candles for her dinner table each night, even though she ate simply and alone. But soon, Ann began to notice that her […]
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