With thanks AND a 10:1 Challenge
Foundation NewsWe have reflected on many things, for which we are grateful. One of those things is the FD/MAS Alliance community. When our son, Jonathan, was diagnosed with this rare disease, it was devastating. It’s still difficult even now. But we have found hope knowing there is an organization helping other families like ours and supporting […]
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Spotlight on Michael Collins, MD
Clinician Spotlight UncategorizedDr. Michael Collins is not just a champion of hope, he is a champion of action. As a globally renowned expert in the clinical care and treatment of fibrous dysplasia and McCune-Albright syndrome (FD/MAS), Dr. Collins has been a driving force for the FD/MAS patient community and for the Fibrous Dysplasia Foundation (FDF) since the […]
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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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Association MASFD Gives $60K Research Gift with Support from FDF
Foundation News Research News UncategorizedWashington DC (September 2020) Fibrous Dysplasia Foundation’s collaboration with Association MASFD results in funding a study to understand the central nervous system manifestations of McCune-Albright Syndrome The Fibrous Dysplasia Foundation (FDF) is proud to highlight the Association MASFD’s $60,000 donation to a globally renowned University of Iowa neuroscientist, Dr. Ted Abel. Dr. Abel is the […]
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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 […]
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An Extensive Review of FD/MAS and a Notable Career Achievement for Two Leaders in the FD/MAS Research Community
Foundation News Research NewsFDF recently added a new article to our collection, an especially exciting publication from two of the world’s most renowned experts on FD/MAS and leading figures on FDF’s Medical Advisory Council, Drs. Michael Collins and Alison Boyce. “Fibrous Dysplasia/McCune-Albright Syndrome: A Rare, Mosaic Disease of Gα s Activation”, published in Endocrine Reviews in April of 2020 […]
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2018 Team FD Awardees: Spring 2020 Update
Foundation News Research NewsThe Fibrous Dysplasia Foundation (FDF) and the University of Pennsylvania Orphan Disease Center announced the four winners of the 2018 Million Dollar Bike Ride research grants in December 2018, and the awardees began their studies in early 2019. These important grants fund innovative research to investigate fibrous dysplasia/McCune-Albright syndrome (FD/MAS). Each investigator recently provided a […]
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A New Team FD/MAS, Same Focus on Research
Foundation News Research NewsThe year 2020 has felt different from 2019 in so many ways, but some important things have remained consistent. This year, just as in the last 5 years, Team FD/MAS will be awarding a research grant to an FD/MAS researcher through the UPenn Orphan Disease Center’s (ODC) Million Dollar Bike Ride. With thanks to Association […]
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Researchers and Advocates Move Forward with Department of Defense Funding
Advocacy News Foundation News Research News UncategorizedOne of the biggest initiatives that FDF is working on right now is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a huge research opportunity that our team of advocates have unlocked for FD/MAS researchers through the US Department of Defense’s Congressionally Directed Medical Research Program (DOD CDMRP). Thanks to the tireless efforts […]
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