Alan and I have had the opportunity to talk to two separate families who are also living with FOP.  Alan talked to Sarah Steele and her mother, Marilyn, over the weekend (a link to an article about Sarah is on the “FOP Web Links” page).  He was so inspired after talking with them.  Sarah is 23 [...]

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We had a pretty good weekend.  To start out, on Friday morning, Erin’s swelling had subsided on her back.  However we can now clearly see the new FOP bone that developed.  It looks very similiar to all the photos we’ve seen of FOP patients.  We’ll take a photo of her back an post it here.  The good [...]

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