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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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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