By Karen
On Friday of this week, our family took a trip to the Vancouver Aquarium.  It happened that all four of us had a rare convergence of a day off work, school, etc, so we decided to go.�
What does this have to do with my daughter Miranda’s Fibrodysplasia Ossificans Progressiva, you may ask?  The answer [...]

Recently Mississippi State University (MSU) held a disability awareness event.  It was sponsored by the disability awareness group on campus, United Students.  Their president, Trish Rader, has FOP and wanted to simulate how difficult it is to do daily tasks for those with FOP.  Even the mayor had a difficult time with putting on a [...]

posted by Suzanne
On October 15th the “Today” show did a health segment about Joshua Scoble and FOP.  Joshua is a three year old boy in Pennsylvania who was diagnosed with FOP (Fibrodysplasia Ossificans Progressiva).  This is very exciting for the FOP community because the segment brought FOP into the national spotlight once again.
Click on the [...]

I have started this blog over and over and have not gotten very far.  This gist of this is to say, anyone can get scammed…anyone can be the victim in fraud.  I thought I purchased a private/individual medical policy that would cover the family.  Boy I was wrong.
A lawyer from the Office of the Insurance [...]

When Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva, one of the earliest things we learned is that it’s a very rare disorder.  In fact, FOP affacts about 1 person in 1.6 to 2 million.  That means the chance of any random person having a child with FOP is way, way under 0.01%…  My mind still reels when I reflect [...]

Tomorrow is Thanksgiving Day in Canada.  On the list of things I’m thankful for, my daughter Miranda’s Fibrodysplasia Ossificans Progressiva isn’t one of them…  HELL no, not thankful for FOP.
If I could wave a magic wand and make FOP disappear, I absolutely would do it without hesitation.  But that, of course, is pure fantasy.  The fact is, my beautiful, [...]

I’ve noticed an interesting connection between Fibrodysplasia Ossificans Progressiva and butterflies.  It’s not a scientific connection, but more of an emotional/cultural affiliation.
The first time I saw the butterfly theme associated with FOP was shortly after Miranda’s diagnosis.  I Googled “International FOP Association”, and up popped the IFOPA’s website with a beautiful artistic rendition of a [...]