Miss (and Ms.) Amazing
Patient SpotlightMeet 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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A Letter and a Call to Action from Mara
Patient SpotlightHi! My name is Mara Watson, I’m 12 years old and this is my story. When I was one, I fell– like any toddler would–and couldn’t walk for a week. At that time, doctors looked at my bones and diagnosed me with a non-ossified fibroma, which means that, that bone had a small part of […]
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Over, Under, Around, or Through
Patient SpotlightWhen Fred Zeth was 8 years old, his parents were told he had cancer. “Take him home and enjoy him,” the doctors told the Zeths, “because he won’t last long.” It was the late 1950s, and none of the doctors in the greater Philadelphia area had ever heard of fibrous dysplasia or McCune-Albright syndrome (FD/MAS). […]
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Join Us: Community Film Screening and Discussion
FDMAS Awareness Week Patient SpotlightPacing the Pool 24th February, 2022 – 7:30 PM EST In honor of FD/MAS Global Awareness Week, FD/MAS Alliance invites you to join us along with special guest, Richard Pace, for a community meet and greet and discussion. The discussion will begin with a screening of Pacing the Pool – a short documentary film focused […]
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A Father’s Strength
Guest Spotlight Patient SpotlightIn light of the sudden passing of Scott Mumper and as a way to honor his spirit, we now share his powerful reflection on parenting someone with FD/MAS. His words inspire us and we hope they inspire you too. Our thoughts and prayers are with his family at this difficult time. Your daughter has McCune-Albright […]
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The ABCs of FD/MAS
Patient SpotlightOne 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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Find Your Strength
FDMAS Awareness Week Patient SpotlightHello, 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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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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Rare and Black: FD/MAS and Racial Healthcare Disparities
Foundation News Patient SpotlightWhen Malajisa was five, her mother, Leslie, noticed that she ran differently. “She was a happy kid and nothing about her looked different,” Leslie recalls, but as she continued to go through growth spurts, that funny run became part of her walk as well. Leslie brought the issue up with Malajisa’s doctor at a regular […]
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Brighten the Corner Where you Stand: Remembering Ann Molitor
Foundation News Patient SpotlightIn 1954, Ann Molitor found herself living alone in Seattle. Her first marriage had come to an end, and she was starting again on her own. To cheer herself up, she would light candles for her dinner table each night, even though she ate simply and alone. But soon, Ann began to notice that her […]
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