• 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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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 ...

Life with FOP, age 11

November 13th, 2016

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When I first started doing this blog, my purpose was to talk about our everyday life in coping with fibrodysplasia ossificans progressiva (FOP). As time went by, though, my daughter got older and more concerned (understandably) about her privacy. As such, I turned more to talking about developments in the FOP community. I think however that every once in a while it can't hurt to talk about the challenges we face, especially if I'm careful to talk about things mainly from my perspective. And so, here are a bunch of the FOP related issues we've dealt with recently... The first thing ...

Something happened in Boston…

October 30th, 2016

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Just this week, an amazing event took place in Boston, USA. Yep, it was to do with fibrodysplasia ossificans progressiva (surprise surprise). As a board member of the International FOP Association (IFOPA), I could have attended, but I had a significant work conflict which couldn't be avoided. Then, just a few weeks beforehand, the conflict disappeared, but I found out that my long-awaited carpal tunnel release surgery was to be scheduled for a few days prior, and of course I would need recovery time. Long story short? I couldn't attend the FOP event - but wow, I so wish I ...

Clinical trial results are in!

October 16th, 2016

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On Friday, Clementia Pharmaceuticals sent out an exciting press release. This was MUCH anticipated in the fibrodysplasia ossificans progressiva community. The subject of the release was, TA DA, the results of the first ever post-gene-discovery-era clinical test of a drug for FOP! So here's the scoop... In 2014, Clementia  started a Phase 2 clinical test of palovarotene, which I will call "PV" for short (they were able to skip over Phase 1 - testing for toxicity using unaffected patients - because another pharma company had done Phase 1 while considering PV for a different disease). In simplest terms, PV has been ...

The reality of doctors and rare diseases

October 9th, 2016

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Doctors... We all need them, but when you're coping with a rare disease such as my daughter's, fibrodysplasia ossificans progressiva, the experience can be by turns incredibly great and extremely frustrating. Some doctors are rock solid and terrific, while others make you want to rip your hair out at the roots. There are no doctors in this photo, but... This was Miranda in San Francisco, where she was meeting with a really top notch physician. Let's start in the pre-diagnosis phase. So, you have a child, and the child has some strange, seemingly inexplicable medical symptoms. Chances are your child will be ...

The early days of an FOP diagnosis

October 2nd, 2016

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There's recently been a cluster of newly diagnosed people who've joined the FOP community; I learn of this when each has a family member added to a private FOP Facebook group to which I belong. Every time I see one of these newbies, which are almost always children, I'm taken back to when my family were in this situation, way back in 2007. Saying that this is a "hard time" is putting it in the mildest possible terms. There's ever so much to figure out - which, of course, got me thinking that this would be a good topic for ...

The genetics of FOP

September 17th, 2016

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I was recently in a bookstore and looking to spend a gift card when I stumbled on an interesting item, which I bought. Science nerd that I am, I've been finding this book absolutely fascinating. It's called "The Gene: An Intimate History", and it's by Siddhartha Mukherjee (no, I am not getting paid to say this, LOL). The book is all about the history of discoveries connected to the gene. One paragraph so far particularly stood out to me. In discussing the disease sickle cell anemia, Dr. Mukherjee had this to say: "It was a Rube Goldberg disease. A change in ...

Back to school, 2016 edition

September 11th, 2016

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Here we are in late summer, and it's "The MOST WONDERFUL TIME of the YEAR!" (to quote that ubiquitous September TV commercial, LOL). We did the lazy summer days thing, enjoyed a long Labour Day weekend, and then it was finally time for school. This is good, as far as I'm concerned, since my kids were definitely ready to go back. [caption id="attachment_3008" align="alignleft" width="600"] Summer fun (obligatory frappuccino in hand).[/caption] My daughter Miranda is 11 and started grade 6 this year. Though she won't admit it - or at least will qualify her answer in various different ways - my girl ...

Philosophy and FOP

August 21st, 2016

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A few weeks ago, someone made a strongly worded comment on one of my blog posts. In my post, I had mentioned about how much I hated fibrodysplasia ossificans progressiva. My commenter called me out on this, stating that she wondered how my daughter Miranda(now age 11) would adapt as she grows, knowing that I hate something which is a part of her. Ouch. I have to admit, this kind of knocked the wind out of me. And yet, the comment did get me thinking... Since then, I've been sort of turning this issue over and over in my mind at random ...

Summer challenges

August 14th, 2016

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Just a few days ago I was chatting with one of my neighbours. We got to talking about what our kids are doing this summer, and she told me about a summer day camp which her kids had attended. She thought this camp was great, and that I should consider it for Miranda next year. I didn't say much - just smiled politely. You see, getting summer camps sorted out for kids like my daughter, who has a disability, requires some effort. Because of Miranda's fibrodysplasia ossificans progressiva, I can't just register her for any old thing and then have her ...
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