Archive for April, 2011
International FOP Awareness Day
April 24th, 2011
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Today as I draft this blog, it’s Easter Sunday. My kids Miranda and Owen have been up for a couple of hours now, and have long since finished their egg hunt. Later on, we’ll go to Grandma Kirsten’s house for a big Easter meal, and probably eat too much chocolate… ;-) It’s a fun holiday.
There was, however, another special day this weekend; something related to Fibrodysplasia Ossificans Progressiva. Yesterday was the first ever International FOP Awareness Day, proclaimed as such by the International FOP Association. The IFOPA created this day as, obviously, a way to bring more awareness to the ... Miranda’s bike, circa 2011
April 17th, 2011
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About 2 weeks ago, we took delivery of Miranda’s brand spankin’ new, awesome bike! So exciting. Miranda had had been waiting for it for a while, so she was thrilled when it got here.
It’s not a typical kids’ bike. We had to order it from a company which makes specialty bikes for kids with disabilities. They sent a sales rep out to Miranda’s school one day to do a test run, and we saw that it could work very well in Miranda’s situation, so we ordered it.
The bike, or perhaps I should say trike, comes from the “Freedom Concepts” company ... The 20th Annual FOP Research Report
April 10th, 2011
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Every year, I look forward to reading the annual report of the Fibrodysplasia Ossificans Progressiva Collaborative Research Project. We in the FOP community are extremely fortunate that once a year, our scientists sit down and write a thorough report for the “lay” audience about what’s happened during the previous year in FOP research. The report comes out in the spring, usually in May or June, but this year it came out a bit early - ie, this week! So very cool. If you’re interested in reading the report, go to the website of the International FOP Association at www.ifopa.org and ... FOP (and us) on the CTV news
April 10th, 2011
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This week, the British Columbia 6 PM CTV News ran a series of clips about rare disorders, each on featuring a different child and his or her family. One of those clips was about us!
The clip was short, about 3.5 minutes long, but it nicely summarized the situation of living with Fibrodysplasia Ossificans Progressiva and the challenges it poses.
OK, if you’re my Facebook friend, then chances are you’ve already seen this video, but maybe there are a FEW other people out there who’d still like to see it… If you’re one of those people, click on: KAREN’S INTERVIEW.
The reason for ...
Major news about a possible drug for FOP…
April 3rd, 2011
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Just today, a study was released about a major new finding… Dr. Pacifici, a colleague of our FOP researchers, Drs. Kaplan and Shore, has apparently been working with a type of substance which has been shown to stop unwanted bone formation. The importance to the Fibrodysplasia Ossificans Progressiva community is obvious - if turned into a medication, this could be used to prevent FOP flare-ups!
Check out the news release at http://www.prnewswire.com/news-releases/potential-treatment-found-for-debilitating-bone-disease-in-wounded-soldiers-and-children-119146519.html.
It’s so exciting for me to read these kinds of things. Of course, it’s early days yet, and the researchers have to do lots of work to determine if this ...
