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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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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Rare with COVID-19
Foundation News Patient SpotlightNew York City reported its first case of COVID-19 in March of 2020. By April it was the hardest hit area of the United States, the city’s medical infrastructure was completely overburdened, non-essential businesses had been shuttered, and thousands of New Yorkers were out of work. As a life-long New Yorker, Lauren Ruotolo, who stands […]
Click to ReadJoin the Rozenblum Family for #GivingTuesday!
Foundation News Patient SpotlightDouble Your Impact to Fight FD/MAS The Rozenblum family wants to support FD/MAS research. Will you match their gift and help researchers connect with the data they need to understand this disease? For every dollar YOU donate, they’ll match until, together we fund the FD/MAS Registry for a full year! Join us by Fight FD/MAS […]
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Rare Passion Opens Rare Opportunities for this FD Warrior
Foundation News Patient SpotlightA disease like fibrous dysplasia, McCune-Albright syndrome (FD/MAS) can drastically alter a person’s daily activities and lifestyle. This can be especially hard on young people, who struggle with feeling side-lined by a genetic mutation that they cannot control or treat. Furthermore, FD/MAS patients often receive their diagnosis in childhood, when what they want more than […]
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Out of Office: Summer Plans!
Foundation News Patient SpotlightWe asked FD and MAS patients what they were up to this summer, and they mentioned things like “surgery” “NIH” and “hospital”—but they also said “seashore” “hiking” and “picnic” — whatever the weather and this summer holds for YOU, FDF is here for it. Check out what others are up to this summer: Jaime will […]
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Keepers of a Rare Space: Facebook’s Patient Support Group Moderators
Advocacy News Foundation News Patient SpotlightOften people reach out to the Fibrous Dysplasia Foundation (FDF) because they feel isolated and overwhelmed with the challenges, decisions, and emotions that come with this diagnosis. FDF can offer vital information on the latest research and the most up-to-date information on FD/MAS treatment and care, on ways people can get involved, and recommendations for […]
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One Boy’s Question, One Family’s Answer
Foundation News Patient SpotlightOrit Beitler and Ziv Rozenblum of Massachusetts joined Team FD as fundraisers for the first time this year. “Our son Jonathan is 7 years old and was diagnosed with fibrous dysplasia (FD) when he was 5. It all started with a rapid and unexpected loss of weight followed by a fracture to his skull as […]
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