Archive for July, 2015

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 ...