News

The ABCs of FD/MAS

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One 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

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Please 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

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On 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 Awareness Week 2021

FDMAS Awareness Week Uncategorized

February 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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Find Your Strength

FDMAS Awareness Week Patient Spotlight Uncategorized

Hello, 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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Researchers and Advocates Move Forward with Department of Defense Funding

Advocacy News Foundation News Research News Uncategorized

One 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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Spotlight on Michael Collins, MD

Clinician Spotlight Uncategorized

Dr. 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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Association MASFD Gives $60K Research Gift with Support from FDF

Foundation News Research News Uncategorized

Washington DC (September 2020) Fibrous Dysplasia Foundation’s collaboration with Association MASFD results in funding a study to understand the central nervous system manifestations of McCune-Albright Syndrome The Fibrous Dysplasia Foundation (FDF) is proud to highlight the Association MASFD’s $60,000 donation to a globally renowned University of Iowa neuroscientist, Dr. Ted Abel. Dr. Abel is the […]

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An FD Warrior’s experience at Rare Disease Week!

Advocacy News Foundation News Uncategorized

Every year, during the week of Rare Disease Day, FD/MAS advocates and rare disease advocates from other communities gather on Capitol Hill in Washington. These advocates use this time to encourage lawmakers to support legislation that helps the rare disease community including advocating for NIH research funding. This year, FD Warrior Brittany Anderson was among […]

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Support the Million Dollar Bike Ride

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All donations via check to Team FD for the Million Dollar Bike Ride should be made payable to the Fibrous Dysplasia Foundation, with the gift memo “UPenn Million Dollar Bike Ride 2020”. Mailed gifts will only be marked anonymous, or attributed to specific fundraiser, if the check is accompanied with a note to that effect. […]

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