Patients with FOP, a grim genetic disease, see hope on the horizon

M ost of the time, Whitney Weldon doesn’t think about her second skeleton. She was 9 the first time it really flared up. Bridges of bone grew from nowhere to freeze her right arm at a 120-degree angle, an excruciating experience that felt “like your bones are trying to come out of your skin,” she said. A decade later, her second skeleton sprouted struts of bone that locked the other arm in place, this time at 180 degrees.

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Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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