Archive for October, 2010

Lace Up For Kids

October 31st, 2010

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Posted by Karen For some time now, I've been attending the meetings of a group called the "Rare Disease Foundation" (RDF), a charity which operates out of Vancouver, Canada.  The RDF has two purposes; the first is to fund, by way of micro-grants, research into rare diseases, and the second is to provide a support and networking group for parents of kids with rare diseases.  Given that my daughter Miranda's disorder, Fibrodysplasia Ossificans Progressiva, is one of the rarest of the rare (see my blog last week, oy),  this is a cause I definitely get behind. Like all other charities, the RDF needs ...

Crazy FOP statistics

October 24th, 2010

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Posted  by Karen We recently got a letter reminding us to renew our membership in the International FOP Association (IFOPA).  The IFOPA is the biggest FOP-related organization in the world; the first one you would ever go to for detailed and reliable information about all things connected to Fibrodysplasia Ossificans Progressiva.  Anyway, I sent off our renewal, and this week the IFOPA sent us something new which they've created, which is a "new members" folder containing a number of documents, including the first ever IFOPA Annual Report (2009), the most recent annual progress report produced by the FOP lab at UPenn, and ...

School, 6 weeks in…

October 17th, 2010

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Posted by Karen Here we are, and Miranda's been in school for about 6 weeks.  So far so good!  I'm happy with how things have been going.  The school seems to have adapted well to the realities of Fibrodysplasia Ossificans Progressiva.    There have been a few changes to the classroom of Mrs. H and Mrs. T.  One thing they did, almost right away, was to designate a "kindergarten area" outside in front of Miranda's classroom and the kindergarten/grade 1 split class next door (both classrooms have outside doors which exit  to a concrete schoolyard, as do all the rooms in this school).  In ...

Seeds of Compassion

October 12th, 2010

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posted by Suzanne We've been home for several weeks from Erin's Make-A-Wish trip.  Only now are we starting to feel that life is going back to normal.  The kids had an amazing adventure while Alan and I experienced a slightly different type of euphoria.  The trip was quite emotional for both of us.  We had planned for the excitement and thrills of our children experiencing the Disney magic first hand.  However the emotional let-down after the trip was quite a surprise to us. Prior to the trip, we had already gone through an emotional roller coaster by just trying to understand and ...

Thankful for Miranda

October 10th, 2010

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Posted by Karen This is the Thanksgiving long weekend here in Canada.  Tomorrow is officially Thanksgiving, but our family is heading off today to my in-laws' home for the traditional turkey and pumpkin pie gorge-a-thon.  Yum! Last year at this time, I did a review of all the things in the Fibrodysplasia Ossificans Progressiva community that I'm thankful for.  Today, I'm thankful for...  Miranda herself.  And, I'm going to tell you some reasons why. Of course, I am eternally thankful also for my son Owen, who is, along with Miranda, the light of my life.  I'm also very thankful for my husband Pete, and ...

A silent auction for FOP

October 3rd, 2010

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Posted by Karen Last Saturday, a very cool lady I know held a silent auction to raise money for our Canadian Fibrodysplasia Ossificans Progressiva charity, the Canadian FOP Network. It's kind of interesting how I met Jo Pronger...  I'd like to tell you about Jo.  She and her husband John are retired, and some time ago the couple decided to take a sightseeing trip to Europe.  A good friend of Jo's mentioned that her cousin lived in the Netherlands, and suggested she visit her.   The Prongers did so...  And it turned out that the friend's cousin has a child with FOP.  A long-time sufferer of ...