News

FD/MAS Alliance Leadership enhanced!

Constant Contact

FD/MAS Alliance is thrilled to welcome four new leaders as well as a familiar face to our Board. The people who lend their time and talent to the FD/MAS Alliance become the main drivers of our activities and initiatives. They plan webinars, patient conferences, and support programs. They build relationships with researchers, oversee our patient […]

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What’s your life motto?

Foundation News

  What’s your life motto? Mine is #KEEPGOING My name is Adrianna, but my friends call me Anna. I am from Columbus, Ohio, and the oldest of four kids. We are a super close family. We pray a lot and value our faith, and it is central to how we see hope in fighting a […]

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I remember happily playing soccer, my dad remembers his son limping. A lot.

Foundation News Patient Spotlight

William 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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Spotlight on Michael Collins, MD

Clinician Spotlight Uncategorized

Dr. 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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A Grateful Farewell to Two Significant Leaders

Constant Contact

FD/MAS Alliance has been immensely lucky to work with some truly inspiring leaders, and this fall, two of our most dedicated directors have stepped down from the board. We are indebted to and deeply grateful for the work that Sue Barnicle, as Treasurer, and Jack Kelly, as Secretary, have done for the FD/MAS Alliance. “It […]

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Letter from the Executive Director: Adrienne McBride

Constant Contact

Although 2020 has been a challenging year, we wish you all a peaceful, safe and happy holiday season! Because of your continued support during this turbulent year, your community, the FD/MAS community is moving forward. Here are some highlights. Fibrous Dysplasia Foundation is now The FD/MAS Alliance.  We’ve refocused our mission,  rebranded our trade name, […]

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Your gift changes lives

Constant Contact Foundation News

Giving Tuesday, December 2, 2020, was very exciting as the FD/MAS Alliance launched Charlie Harles’ Angels, our new monthly giving society, in honor of our founder, Charlie Harles! We’ve added new monthly donors to our ranks today, increasing our overall monthly giving pledges to over $1,800, which provides a foundation of support for people living […]

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With thanks AND a 10:1 Challenge

Foundation News

We 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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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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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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