This is catastrophic beyond belief.

327

That can send the condition into a wild state of flare-up.

276

You can't keep a child in a glass box.

264

[Life expectancy for people with FOP is] tremendously variable, ... The average life span is mid-40s, but it ranges from the teens to the 80s.

263

Generally, though, these people are quite healthy, ... Perhaps there is an auto-inflammatory component because they tend to be tremendously resistant to infections. But if they happen to get a cold or respiratory infection, it's more likely to become a complicated issue.

229

What happens in FOP is children continue to make new pieces of the skeleton after birth, ... The signal is not just 'make more bone.'

218

These people are literally imprisoned in a second skeleton, ... It transforms muscles, tendons, ligaments -- connective tissues become sheathed in bone. It spans joints, locking them into place and rendering movement completely impossible.

134

Even if the answer to FOP is only for FOP, it wouldn't in any way dissuade me from working on it, ... I would hope we can make a difference for these kids (and find) medications, treatment or therapy that would enable them to prevent a joint from turning into bone or restore movement to some joint already frozen.

117

[Several proteins have been identified as vital for bone growth, including one called BMP4.] We know BMP4 is one of the terrorist agents that triggers new bone formation, ... We're working on therapies to limit the production of BMP4 in people who have FOP.

92