News

Faces of FD/MAS: Corey’s Story

Patient Spotlight

Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In honor of Mother’s Day and […]

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Faces of FD/MAS: Nikki’s Story

Patient Spotlight

Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In celebration of Rare Disease Day […]

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Faces of FD/MAS: Dennis’s Story

Patient Spotlight

Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In celebration of FD/MAS Global Awareness […]

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Kelly Cohen – a Mother, a Nurse, and a Champion for FD/MAS

Patient Spotlight

Kelly’s connection to the FD/MAS began with the birth of her second child, Liam who entered the world at just 4 pounds and began to lose weight instead of gaining it. Although she no longer works professionally as a nurse, she uses her training, skills, and dedication to advocate for her son and others with […]

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Patient Spotlight: Mara Watson

Patient Spotlight

Mara’s battle with FD/MAS began when she was a toddler. After a seemingly minor fall she avoided putting any weight whatsoever on her leg and foot. A doctor’s appointment revealed a peculiar spot on her fibula that was diagnosed as benign.  Mara is now a resilient thirteen-year-old who has displayed an indomitable spirit throughout her […]

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Faces of FD/MAS: Camryn’s Story

Patient Spotlight

Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. This giving season, we’re focusing on the story of Camryn Berry, an FD/MAS patient, and 3rd-year Ph.D. student studying […]

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Camryn Berry’s Experience at the FD/MAS Community Conference

Patient Spotlight

This giving season, we’re focusing on the story of Camryn Berry, a patient and a third year P.h.D. student researching pain mechanisms of fibrous dysplasia, McCune-Albright syndrome (FD/MAS). Camryn recently attended the FD/MAS Community Conference and shared a bit about her experience: I attended the Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS) Community Conference in September of 2023 […]

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Vote for FD/MAS Community artists in RARE Artists Competition!

Advocacy News Patient Spotlight

We’re thrilled to share that not one, but TWO FD/MAS community members have been named finalists in Every Life Foundation‘s RARE Artist competition. We’re so inspired by Katie Corvelle and Christina Schulz for both their creative talent and their advocacy. Now, they need our help as the winners are selected through community vote! We encourage […]

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Meet the PAC!

Advocacy News Foundation News Patient Spotlight

In July 2022, FD/MAS Alliance launched our inaugural Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance.  Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful.  The community members who stepped forward to form this first class of ambassadors represent some of […]

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Miss (and Ms.) Amazing

Patient Spotlight

Meet Ellasyn Berry of Little Chute, Wisconsin.  At 13 years old, she is a rollercoaster rider, a swimmer, a Bath & Body Works shopper, a future anesthesiologist, and living every day with McCune-Albright syndrome (MAS) and Polyostotic Fibrous Dysplasia (PFD).  Ellasyn is surrounded by family that she lovingly describes as “chaotic.” Mom (Leah) works for […]

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