• 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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More Friends with FOP

August 23rd, 2015

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On Thursday of this past week, I had the great pleasure to meet up with my friend Steve, an adult who has fibrodysplasia ossificans progressiva, and his wife Nancy (OK, she doesn't have FOP, but is obviously a part of our community). They live in Texas, which is a very long way from here indeed, but were on summer vacation and happened to find themselves in Burnaby, BC, where I and my family live. Their vacation sounds pretty great - they were in the Vancouver area for a few days, and then were off to catch a passenger train through ...

Summer activities and FOP

August 16th, 2015

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I understand that summer is over or almost over for kids in some places, and it's back to school... But not here in Burnaby, BC, nope. Our school board always starts school on the first Tuesday after Labour Day, which this year is a very late September 8. As such, my kids won't be returning to school for another 3 WEEKS! (Aside, and not really the point of this blog, but a 10 week long summer is too long, IMHO.) This means, of course, 3 more weeks of sorting out summer activities to keep 'em busy. For my 13 year old son, ...

Walk for FOP 2015

August 9th, 2015

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Another year, another successful Walk for FOP... Woo hoo! I'm delighted to tell you that our event this year brought in over $24,000! This is an amazing number, and will probably yet climb a bit this week after some last-minute contributions which I understand are on the way. We gathered these funds for the benefit of the Canadian FOP Network, a registered charity in Canada which financially supports research into fibrodysplasia ossificans progressiva. Funny though, the whole thing started with a small glitch. See, we ordered these great T-shirts to wear on our Walk, and I think they looked great... However, when we ...

Meet the honourees

July 31st, 2015

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Coming up the day after tomorrow - it's the Walk for FOP! I don't normally blog on a Friday, but here I am coming at you... I thought to myself, why not share a short profile of each of the 3 wonderful gals whom we're honouring at our Walk on Sunday? As she is my kid, I'll start with Miranda. As you probably know, Miranda is 10 years old and has fibrodysplasia ossificans progressiva. Miranda's FOP became active and was diagnosed in 2007 when she was age 2. Unlike many people with FOP, Miranda was never misdiagnosed - she simply went through ...

A “science-y” summer

July 19th, 2015

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For my daughter Miranda, this week was all about SCIENCE! Miss M just finished a science-themed day camp this Friday, and today, we went to the Vancouver Aquarium and learned all about penguins, sea otters, and more... It was a totally action-packed week for Miranda, and very cool, but started with a scare courtesy of fibrodysplasia ossificans progressiva. Yeah, good old FOP... 9 days ago, Miranda started complaining of a very sore upper back. This went on for a couple of days, but I didn't think much of it because this isn't too uncommon for her, especially at the end of ...

Why an FOP disease registry?

July 12th, 2015

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Are you familiar with the expression, "an embarrassment of riches"? In case not, that's a situation where you've got lots and lots of a very good thing. That's sort of the situation we're in right now with developments toward treatment for fibrodysplasia ossificans progressiva. After my daughter Miranda was diagnosed with FOP in 2007 at age 2, we had a lot of years were it was a research article here, another one there, but nothing that felt really concrete... Until a couple of years ago. Since then, it feels like things have been exploding around us. Which is absolutely fab, ...

Fundraising for FOP in Canada

July 5th, 2015

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Summer seems to be the season of choice for fibrodysplasia ossificans progressiva fundraising in Canada. We've got 4, count them, FOUR, separate events going on this year. Which is awesome, because as of 2015, the momentum toward a treatment for FOP is full-tilt, and we really, REALLY want to see that continue. If we keep up the fundraising work and support FOP research, it's not inconceivable that we could have an approved FOP medicine before my daughter Miranda's 20th birthday (she is 10 years old now), and maybe even well before that. There's a drug in clinical testing for FOP ...

Summer 2015 – ahhhh….

June 28th, 2015

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It's SUMMERTIME! HOORAY! This is looking to be a pretty fab summer, if events so far are any indication. So, what has my daughter Miranda, the star of my blog, been up to? Let's start by going back to a post I did a few weeks ago, wherein I talked about Miranda chafing at the bit for more independence, and this being challenging in the context of her fibrodysplasia ossificans progressiva. Well, no sooner did I post this when one of our most excellent and kind neighbours stepped up and asked if Miranda could babysit her cat while she was out of ...

What’s an IEP?

June 14th, 2015

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When you become a parent of a child with special needs, there's a whole lot of terminology and jargon which you have to learn... Yes, a lot of it is "disease-specific", but a lot of it is also common to every child with a health or developmental concern. Take, for example, the IEP. If you aren't a special needs parent, a teacher or an educational assistant, chances you are you will have never heard of this acronym. IEP stands for "individualized education plan", and it's what the school system designs for your child who needs some adaptations to attend and/or learn ...

What is a “natural history study”?

June 7th, 2015

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As I've said about a gazillion times on this blog, the thing I want more than anything is a cure or effective treatment for my daughter Miranda's fibrodysplasia ossificans progressiva. Super excitingly, that now seems closer than ever before, as a potential medicine for FOP is currently undergoing clinical testing, and a number more are in the works. As the UPenn FOP researchers said in the recent 24th Annual Report of the FOP Collaborative Research Project, "The van has left the driveway" on research, and particularly drug testing (see p. 5 of the study at at http://www.ifopa.org/news-and-events/latest-news1/525-twenty-fourth-annual-report-of-the-fop-collaborative-research-project-.html ) However... It's not just ...
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