Friends With FOP

Posted by Karen A couple of weeks ago, Suzanne blogged about her daughter Erin's preschool graduation.  On Friday, June 25, it was Miranda's turn in the spotlight! For the past two years, Miranda's been attending a daycare a block from where we live, and about a year ago, the centre started up a new Montessori preschool.  We were excited to put Miranda in preschool.  The people at this centre are just excellent folks - while they were a bit nervous about Miranda's Fibrodysplasia Ossificans Progressiva, they were welcoming and fully willing to give her a great preschool experience.  As with the daycare, the ...

Posted by Karen This week, the "19th Annual Report of the Fibrodysplasia Ossificans Progressiva (FOP) Collaborative Research Project" was released to the public.  This year's report was written by Dr. Fred Kaplan, Dr. Robert Pignolo and Dr. Eileen Shore of the University of Pennsylvania.  While much of the work they describe was carried out at the authors' own lab (colloquially known as the "FOP Lab"), the title of the report reflects that a  number of different research projects took place in locations around the world by various scientists. I like reading this report every year.  It's written for a lay audience, so ...

Posted by Karen This was the weekend of the big ride... I blogged here a while ago about how Vanessa Herce, who's sister Valerie Herce has FOP, was planning a bike trip from Niagara Falls to Toronto, Canada to raise money to support FOP research.  I'm delighted to tell you that Vanessa accomplished her goal this weekend, and then some. My congratulations and heartfelt thanks to Vanessa, who raised over $30,000 in donations for the Canadian FOP Network!  This is a truly amazing accomplishment.  I hope Vanessa and her team of riders are enjoying a well-deserved rest today. [caption id="attachment_921" align="alignnone" width="300" caption="Miranda says, "Thanks Vanessa!""][/caption]

Erin did it...completed two full years of preschool!  I would love to publicly thank Ms. Tina and Ms. Sally at Cottage Lake Elementary for teaching Erin so many wonderful things.  Erin had her moments but really enjoyed going to school. It's amazing to have a child at 4 years old learning how to read.  My boys didn't have their verbal skills down at  four let alone reading skills!  Erin has had a major boost to her academics because of the preschool.  It just seemed like yesterday I was putting my little 3 year old on a school bus for the ...

Posted by Karen This is an interesting and hopeful time of year for the Fibrodysplasia Ossificans Progressiva community.  I look forward to June because it's usually when we get to see the annual research report by the Centre for Research into FOP and Related Disorders, aka the "FOP Lab".  I did a blog last year about the 2009 report, and I plan to do one when the 2010 report is released. In the research report, the scientists at the FOP Lab describe the various research projects they've been working on during the past year.  They do an excellent job at explaining their research in terms ...

Posted by Karen We've been having one of those great early summer weekends where the weather is nice, there's cool stuff to do and all is right with the world.  The kind of weekend you remember fondly when you're older as "the good times"...  The concerns of Fibrodysplasia Ossificans Progressiva barely registered on us this weekend (which is as it should be). The fun started on Friday.  I had to do a thing for work (boo!), and since that's usually my day off, Pete took the day off instead to look after Miranda.  He decided to take her on the Skytrain to ...