• An experiment in letting go (a little bit)

    July 1st, 2013

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    Posted by Karen Yesterday we got back from 2 days at Girl Guide Camp.  Yes, I attended with Miranda, the way I did the past 2 years.  There are always a number of mom volunteers, so having one more along for the ride doesn't cause anyone to blink an eyelash.  This year though, we handled it a bit differently than we did in the past... This is Miranda's third year in Girl Guides, and it's necessary for me to attend camp with her.  The girls are supposed to be able to dress themselves and use the bathroom on their own, neither of which Miranda can do ...
  • Stuff leading in to summer…

    June 23rd, 2013

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    Posted by Karen I must say, I am SERIOUSLY looking forward to July...  Because almost all my kids' activities will be finished.  ;-) Between Miranda and her brother Owen, I was seriously run off my feet this week.  Especially this weekend.  Get Miranda's schedule yesterday - first it was the end-of-season softball wind-up, then the end-of-year Brownies picnic, then a classmate's movie/bowling birthday party.  We didn't get home until 8 PM. Miranda was in typical form yesterday - and by that I mean unbelievably full of energy.  Fibrodysplasia ossificans progressiva?  Ha, what's that and why would it make me tired or affect anything I ...
  • I am so not good at…

    June 16th, 2013

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    ...Fundraising.  In fact, one might say that I'm pretty pathetic at it.  Big old lameosaurus, that's me. Yes, I suck at it, and yet I can't throw my hands in the air and give up.  I am compelled to fundraise because of how breathtakingly close we are to clinical trials for drugs to treat fibrodysplasia ossificans progressiva (FOP). [caption id="attachment_2085" align="alignnone" width="225"] Our dear Miranda, our reason for FOP fundraising[/caption] I blogged last weekend about the Canadian FOP Network's conference the week before.  At that conference, we heard from the amazing scientists at the University of Pennsylvania about the pace of research for effective ...
  • Canadian FOP conference, 2013!

    June 9th, 2013

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    Posted by Karen It’s over…  WAAAHHH!!  Gulp.  Sniff.  I’m sad that it’s finished and I’m not there anymore. “It” was the Canadian FOP Network’s conference last weekend.  It was so great, and felt so dang short.  It was only a day and a half long, and it went by in the blink of an eye.   But on the other hand, I have lots of great memories from it, so I guess I milked everything I could from it.  ;-) So here’s how it all went…  A week ago Thursday, my daughter Miranda and I got up bright and early in the morning and ...
  • “LUCKY” to have FOP?

    May 26th, 2013

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    Posted by Karen OK, of course everything's relative.  Obviously I don't mean that anyone is lucky, period, to have Fibrodysplasia Ossificans Progressiva.  That bit is pretty much the opposite.  What I mean is that in comparison to the situation for many, many other rare diseases, people with FOP are lucky. Here's what I mean...  One of the biggest problems faced by people with most rare disease is that there are no cures, no treatments, and not even any research going on.  If you're a scientist and you could research, say, cancer, which afflicts millions of people, or a rare disorder that has a ...
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On “tumours and toes” – it’s FOP Awareness Day

April 23rd, 2017

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Today is FOP Awareness Day, a day promoting knowledge of fibrodysplasia ossificans progressiva (FOP). My daughter Miranda, who is now 12 years old, suffers from FOP, and it's my mission in this post to tell you all about it... Twelve years and three months ago, my new baby daughter and I were getting ready to go home from the hospital following an easy, uneventful birth. Everything had gone perfectly, and I was euphoric. Just before we left, however, my midwife came by and said, "Miranda looks great, and is doing so well! There is just this one little thing, though -  her ...

The FOP one was the BEST table at the rare disease conference…

April 2nd, 2017

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On Thursday and Friday of this week, I attended the annual conference of the Canadian Organization for Rare Diseases (CORD). I'm used to being the only person in the FOP community at these things, but not this time... On this occasion, I and two other moms of kids with fibrodysplasia ossificans progressiva attended as guests of Clementia Pharmaceuticals. Clementia is the company doing clinical testing of Palovarotene, a potential drug to treat FOP, and it sent along two representatives - Stephanie Hoffman and Eric Grinstead. The result was that there were 5 OF US sitting together at the conference. We ...

A tale about housing

March 19th, 2017

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The full title of this blog post should actually be, "A tale about housing, or real estate in Vancouver is insane". Yep, today my post is about our recent... "struggles"... concerning buying a house. The story starts back in 1999, before my husband and I had kids. We wanted to buy a home, but not pay through the nose (or what we thought was through the nose - ha), so we decided on a townhouse. We got a pretty great place, just shy of 1800 square feet spread over 3 levels. This home suited us very well for a few years, ...

A board meeting, a research development, and the latest on the flare

March 5th, 2017

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Sometimes long periods go by, and it seems like nothing much happens concerning my daughter Miranda's fibrodysplasia ossificans progressiva (FOP). This is not one of those times... I feel like I've been focusing a lot on FOP in the past month. First, in mid-February, I flew out to Florida to attend the annual "in person" board meeting of the International FOP Association (IFOPA). From where I live in Vancouver, Canada, that's a SUUUUPER long way to travel for a short time... But it's only once a year, and it's extremely important, so it's worthwhile. Anyway, out I went on February 9, ...

“P” is for “progressiva”… sigh

February 19th, 2017

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One of the many frustrating things about fibrodysplasia ossificans progressiva is that a person with FOP can go months, even years, with no change in their ability to function, and then SUDDENLY lose movement overnight. That's what happened to my daughter Miranda recently. She realised about a month ago that her knee was hurting, and by the next day, she could bend it only a third of her former range. That movement is now gone for good. You probably know that FOP is all about building bone where there wasn't any before. However, it takes time for bone to grow, and it ...

A flare, and a short trip to San Francisco

January 29th, 2017

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My daughter Miranda, who turned 12 a couple of weeks ago, hadn't had any flare-ups of her fibrodysplasia ossificans progressiva (FOP) for quite a while. Further, it had been about 3 years since any flare had affected her mobility. And then, all of that changed last week. It was a Thursday night, January 19, when Miranda said, "Umm, Mom, my knee kind of hurts. And also I'm having a bit of trouble with stairs." She said this in a low key sort of a way, but from experience, I know that these things can be anything but minor. I dropped everything ...

Miranda is 12…

January 15th, 2017

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Today is Miranda's "hape borfday". This was her creative spelling when, at age 4, she was determined to learn to read and write and sounded out "happy birthday" for a birthday picture she drew for me. Yes, Miranda was a smarty pants both then and now. ;-) As has been my habit, I'm going to use this opportunity to tell you about my dearest girl. Who is Miranda at age 12? First, since this is a blog about our life with fibrodysplasia ossificans progressiva, the FOP stuff. Luckily, Miranda's FOP has been pretty quiet for a few years now. Her last flare-up was ...

A word for 2017

January 1st, 2017

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Happy New Year, friends! Today is January 1, 2017, and my family members are starting to lazily wake up after a night of watching Star Wars movies (in tribute to the late, great Carrie Fisher). Later on, we'll be enjoying one last big holiday meal with my kids' grandmother. As for right now - I'm going to talk about my word for the new year... Drumroll please:  2017 for me shall be about overcoming (or at least striving in that direction). [caption id="attachment_3044" align="alignleft" width="600"] OK, this wasn't last night, but this pic of Miranda and me was taken at a holiday party.[/caption] As ...

Snow (and kids with FOP)

December 11th, 2016

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We usually don't get much snow where we live. The British Columbia, Canada south coast is much more likely to see a very rainy winter than anything else. A light dusting of snow 2 or 3 times per winter (and lasting maybe an hour at a time before disappearing) is typical. However, every now and again, snow decides to fall on us BUT GOOD. That happened this week. We had a big dump of snow on Monday, and then another on Friday. [caption id="attachment_3039" align="alignleft" width="600"] The view from our house this week.[/caption] So what does this have to do with my daughter ...

No more lab bench and lone candle, or, the latest in FOP research…

November 19th, 2016

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Back in 2007 when my daughter Miranda was 2 years old and had *just* been diagnosed with fibrodysplasia ossificans progressiva, we learned there was "a guy" researching FOP at the University of Pennsylvania. Considering how phenomenally rare FOP is, we assumed this must be a single scientist working on his own, with no support. My dad said he envisioned a doctor sitting at a lab bench, peering through a microscope to the light of a single candlestick. Kind of a Charles Dickens-esque, "Bob Crachit" type of situation, LOL. Fortunately, and to our great relief, this was incorrect. In fact, there ...
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