News

THANK YOU to all who support TEAM FD/MAS

Uncategorized

We are so grateful to the FD/MAS community, donors, and riders for the Annual Million Dollar Bike Ride sponsored by Penn Medicine Orphan Disease Center for supporting 2021 Team FD/MAS! These gifts and registration fees directly fund FD/MAS research grants and support FD/MAS Alliance’s mission to advocate for research for evidence-based treatments for those living […]

Click to Read
Lauren Foster Headshot

A Message from Lauren Foster, Patient Advocate

Advocacy News Constant Contact Foundation News Uncategorized

I 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 […]

Click to Read

How close are we to developing a drug to treat FD/MAS?

Uncategorized

How close are we to finding a treatment for FD/MAS? An audience member posed this question in a recent update from 4 researchers funded by Team FD/MAS, and the answer? It depends.   Because of your generosity, the last few years have been a real breakthrough for FD/MAS. Team FD/MAS has been partnering with the […]

Click to Read

The ABCs of FD/MAS

Uncategorized

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 […]

Click to Read

A Farewell to an Unmatched Leader

Uncategorized

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 […]

Click to Read

COVID-19 and FD/MAS an Updated Conversation

Uncategorized

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 […]

Click to Read

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 […]

Click to Read

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 […]

Click to Read

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 […]

Click to Read

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 […]

Click to Read