Archive for February, 2015

Travelling for FOP!

February 15th, 2015

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Short post today just to mention that later this week, I will be travelling to Philadelphia, Pennsylvania for my first ever "in person" board meeting of the International FOP Association. I was elected to the board in January of 2015. Yay! I am very much looking forward to this. OK, some of it (paperwork and budget reviews) is likely to be kind of dull, but on the other hand I will get to learn about how the IFOPA is supporting ongoing fibrodysplasia ossificans progressiva research. Also, I understand that we will be granted a look at UPenn FOP lab, which I ...

Why I can’t fully vaccinate my child

February 8th, 2015

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I have always been a big supporter of vaccination. My husband and I were immunized as children and got our son Owen all of his shots right on time, and when our daughter Miranda came along 3 years later, we did that for her as well. As far as I'm concerned, vaccinating is a no-brainer. And, I've never seen a speck of evidence that vaccination did anything for my children but good. However... Where my daughter is concerned, it turns out we dodged a major bullet. When she was diagnosed in 2007 at age 2 years and 3 months with the ...

Why other special needs parents are my peeps

February 1st, 2015

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Recently I had an interesting conversation with another parent. I was at a kid-related event, and started chatting with a mom whom I knew a little bit, but not very well. She had adopted two children with significant behavioural and cognitive challenges from a bunch of different problems, and within a very short period of time, she was telling my all about her kids' issues, treatment they had had, difficulties they were facing, and so forth. It was an interesting story, and by virtue of my experience with my daughter's fibrodysplasia ossificans progressiva, I was able to relate to many ...