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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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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FD/MAS Alliance Leadership enhanced!
Constant ContactFD/MAS Alliance is thrilled to welcome four new leaders as well as a familiar face to our Board. The people who lend their time and talent to the FD/MAS Alliance become the main drivers of our activities and initiatives. They plan webinars, patient conferences, and support programs. They build relationships with researchers, oversee our patient […]
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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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A Grateful Farewell to Two Significant Leaders
Constant ContactFD/MAS Alliance has been immensely lucky to work with some truly inspiring leaders, and this fall, two of our most dedicated directors have stepped down from the board. We are indebted to and deeply grateful for the work that Sue Barnicle, as Treasurer, and Jack Kelly, as Secretary, have done for the FD/MAS Alliance. “It […]
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Letter from the Executive Director: Adrienne McBride
Constant ContactAlthough 2020 has been a challenging year, we wish you all a peaceful, safe and happy holiday season! Because of your continued support during this turbulent year, your community, the FD/MAS community is moving forward. Here are some highlights. Fibrous Dysplasia Foundation is now The FD/MAS Alliance. We’ve refocused our mission, rebranded our trade name, […]
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