Friends With FOP

I've been thinking about a quote from an FOP mom I heard a while ago.  It goes something like this:  There's just so much we don't know about FOP.  Almost every question you can ask about life with FOP, the answer is, "I don't know.  I don't know.  I DON'T KNOW!!!" For me, this quote really captures the uncertainty about so much with Fibrodysplasia Ossificans Progressiva.  Consider these kinds of questions, for example... - If you become symptomatic with FOP at a young age, does that mean you'll have extensive disability earlier in life than someone who becomes symptomatic older?  Maybe, but not ...