• 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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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 ...

Independence

May 31st, 2015

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My daughter is now a pre-teen. I guess that starts around age 9, and she's now 10 (and a half). And, like clockwork, over the past year-ish I've been seeing Miranda push for more freedom. This is absolutely age-appropriate, but it's definitely... a challenge in the context of fibrodysplasia ossificans progressiva. With more freedom comes more risk. With FOP, even a minor fall or bump can lead to a flare-up and more bone. It can be a vicious cycle - the child is tired of restrictions, so does more things and take more chances, suffers a trauma, gets a flare-up, flare-up ...

Research, and pushing for more of it

May 24th, 2015

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Every year I really looking forward to reading the annual report of the Fibrodysplasia Ossificans Progressiva Collaborative Research Project. The "Collaborative Research Project" is the official name for a group of scientists headquartered at the University of Pennsylvania who are busting their butts to develop treatments and a cure for FOP.  And, ta-daa, the 24th such annual report was released this week. Yay!! Things have come a long, LONG way from 2007 when I read one of these reports for the first time. At that point, the researchers were still on a high from having announced the FOP gene discovery the ...

Sleepover with the Girl Guides

May 17th, 2015

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I am unbelievably tired right now - but I guess staying up ALL NIGHT will do that for ya, ha ha. Must find some way to make it through the rest of the day until bedtime, so figured I may as well blog like I usually do on Sundays... So why was I up all night, you ask? That would be because my daughter Miranda's Girl Guides group - of which I am also one of the leaders - had a sleepover last night at the H.R. MacMillan Space Centre (aka, the Planetarium) last night. Actually, this was a district sleepover, ...

Mother’s Day for moms of kids with FOP (and other special needs)

May 10th, 2015

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Today is Mother's Day, which explains why I'm a bit later than usual at writing my weekly blog post... See, this morning we all hopped in the car and drove to a fab Vancouver-area restaurant called The Boathouse, which has an amazing and huge Mother's Day brunch. Then, after that, we went for a walk along the seashore at English Bay. Wonderful morning, really. Mother's Day often gets me thinking about this whole motherhood gig, and the ways in which it's coloured by experience with my daughter's fibrodysplasia ossificans progressiva. Now, to be fair, I'd say that in most of the ...
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