Archive for June, 2015

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 ...