News

Brighten the Corner Where you Stand: Remembering Ann Molitor

Foundation News Patient Spotlight

In 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 and Black: FD/MAS and Racial Healthcare Disparities

Foundation News Patient Spotlight

When 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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Rare with COVID-19

Foundation News Patient Spotlight

New 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 […]

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Join the Rozenblum Family for #GivingTuesday!

Foundation News Patient Spotlight

Double 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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Pedro carrying the Olympic torch for the 2016 games

Rare Passion Opens Rare Opportunities for this FD Warrior

Foundation News Patient Spotlight

A 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 Spotlight

We 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 Spotlight

Often 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 Spotlight

Orit 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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From Hobby to Hope: How a Mother’s Love is Fighting FD/MAS in France

Foundation News Patient Spotlight

Whether you love the cooler temperatures of fall, or hate it, Aurélie Lagneau of France has given the FD/MAS community a new reason to be enthusiastic about sweater weather. This avid knitter has taken her skill with yarn and her love for her daughter to create a unique fundraiser, Supportive Skein, which has already raised $28,000 […]

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The Artist Who Lived Life with Every Stroke

Foundation News Patient Spotlight

“I knew something was not right with my child. I could sense it from when he was very small,” explained Mauricio Saravia’s mother Marisa Damele. “Then, as he grew older, he would hit his head on the wall and with his hands, we didn’t know exactly why he would do this. I’m his mother. Mothers […]

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