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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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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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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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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From Hobby to Hope: How a Mother’s Love is Fighting FD/MAS in France
Foundation News Patient SpotlightWhether 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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