Posted by: getthenac | February 7, 2011

Readers who care

from Wayne Wood:

The new edition of Vanderbilt Medicine, edited by Kathy Whitney,  has a story by Nancy Humphrey on a rare and terrible disease called fibrodysplasia ossificans progressiva (FOP), which, as Nancy says in her story, replaces “soft tissue like muscle and ligament with bone and, at its worst, turning bodies into living statues.”

Nancy’s story focuses on Charles Hong, M.D., Ph.D., an assistant professor of Medicine, Pharmacology and Cell and Developmental Biology, whose drug discovery research has uncovered a compound that could prevent the progression of the disease, and on Sharon Kantanie of Brentwood, who is now 41, and who was diagnosed with FOP when she was 6.

Only about 3,000 people in the world have FOP, but in the week or so that this issue has been online,  people with FOP and their family members have been reading the story, posting it on Facebook for others to read, and also posting comments on the Vanderbilt Medicine home page. They thank Dr. Hong for his work, they speak in support of Sharon Kantanie. Nancy’s story offers support and hope to people who are affected by this disease, while also serving as an excellent example of a feature story AND a report on scientific research.

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