The path to accessibility

July 9th, 2017

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As some of you may know, our family recently moved from a 3 storey townhouse to a rancher home. The purpose was to have a home which would be accessible for my daughter Miranda. Over the past two-to-three years, Miranda has been having her first FOP leg flare-ups, and it's been getting harder and harder for her to climb stairs. Living in a townhouse with no bathrooms on the main floor and all bedrooms on the upper floor just was not cutting it. Fibrodysplasia ossificans progressiva decided that it was time for us to relocate. We moved into our new place ...

FOP family meetings are great

July 2nd, 2017

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On the weekend before last, we attended the Canadian FOP Network's FOP Family Conference. By "we", I mean me, my daughter Miranda, my mother-in-law Kirsten, and my parents, Helen and Malcolm (Pete and Owen stayed home because of Owen's ball hockey playoffs). It was so wonderful! Our Canadian community of folks affected by fibrodysplasia ossificans progressiva is small. By population we should have about 16 or 17 people, and when I count in my head the number I know of, that's about right. We had 12 FOP people at our conference, and only 1 was international, so that means we had close ...

Walk for FOP 2017 – it’s coming up…

June 25th, 2017

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Hello again! Did you miss me? I was gone for a few weeks while moving to our new house, but here I am again, raring to go… And now, fanfare please, I am excited to announce the beginning of our annual fundraising campaign for FOP! This will be, what, year number 4, I think, for this event? On Sunday, August 6, we will be doing the Walk for FOP in Calgary, Alberta. This is a joint effort between the Friz/Munro and Degenhardt families. The Walk is in honour of my 12-year-old daughter, Miranda, and our friend Kathleen, a young woman who ...

A big change (and so much work)

May 28th, 2017

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Hello friends. It's been a few weeks since I blogged. I'm feeling guilty... But in my defence, I have a good excuse. You see, we're in the midst of moving! Yep, we've bought a new family home, and the last month has been a whirlwind of packing, moving boxes, organizing renovations, patching up broken stuff in old home, and ever so much more. The big day, MOVING DAY, is a week from this Monday. Before that date, we have to get as much of the smaller stuff out of the house as possible, and prepare for (and do) an open house ...

We’re excited about London!

May 7th, 2017

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Guess what's coming up... It's the Canadian FOP Network family conference. Woo hoo! The CFOPN conference only comes up once every 3 or 4 years, and when it does, it's EPIC! ;-) This year promises to be the best ever - we've got a packed agenda set. (I say "we" as I am a board member of the CFOPN.) The 2017 version of this event will be Friday, June 16 and Saturday, June 17, and as before, it will be at the Thames Valley Children's Centre (a rehab facility where our board chair, Carrie Connell, happens to be employed). It all ...

On “tumours and toes” – it’s FOP Awareness Day

April 23rd, 2017

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Today is FOP Awareness Day, a day promoting knowledge of fibrodysplasia ossificans progressiva (FOP). My daughter Miranda, who is now 12 years old, suffers from FOP, and it's my mission in this post to tell you all about it... Twelve years and three months ago, my new baby daughter and I were getting ready to go home from the hospital following an easy, uneventful birth. Everything had gone perfectly, and I was euphoric. Just before we left, however, my midwife came by and said, "Miranda looks great, and is doing so well! There is just this one little thing, though -  her ...

The FOP one was the BEST table at the rare disease conference…

April 2nd, 2017

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On Thursday and Friday of this week, I attended the annual conference of the Canadian Organization for Rare Diseases (CORD). I'm used to being the only person in the FOP community at these things, but not this time... On this occasion, I and two other moms of kids with fibrodysplasia ossificans progressiva attended as guests of Clementia Pharmaceuticals. Clementia is the company doing clinical testing of Palovarotene, a potential drug to treat FOP, and it sent along two representatives - Stephanie Hoffman and Eric Grinstead. The result was that there were 5 OF US sitting together at the conference. We ...

A tale about housing

March 19th, 2017

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The full title of this blog post should actually be, "A tale about housing, or real estate in Vancouver is insane". Yep, today my post is about our recent... "struggles"... concerning buying a house. The story starts back in 1999, before my husband and I had kids. We wanted to buy a home, but not pay through the nose (or what we thought was through the nose - ha), so we decided on a townhouse. We got a pretty great place, just shy of 1800 square feet spread over 3 levels. This home suited us very well for a few years, ...

A board meeting, a research development, and the latest on the flare

March 5th, 2017

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Sometimes long periods go by, and it seems like nothing much happens concerning my daughter Miranda's fibrodysplasia ossificans progressiva (FOP). This is not one of those times... I feel like I've been focusing a lot on FOP in the past month. First, in mid-February, I flew out to Florida to attend the annual "in person" board meeting of the International FOP Association (IFOPA). From where I live in Vancouver, Canada, that's a SUUUUPER long way to travel for a short time... But it's only once a year, and it's extremely important, so it's worthwhile. Anyway, out I went on February 9, ...

“P” is for “progressiva”… sigh

February 19th, 2017

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One of the many frustrating things about fibrodysplasia ossificans progressiva is that a person with FOP can go months, even years, with no change in their ability to function, and then SUDDENLY lose movement overnight. That's what happened to my daughter Miranda recently. She realised about a month ago that her knee was hurting, and by the next day, she could bend it only a third of her former range. That movement is now gone for good. You probably know that FOP is all about building bone where there wasn't any before. However, it takes time for bone to grow, and it ...
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