Archive for January, 2011
“The Boys on the Board…”
January 30th, 2011
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Posted by Karen
There was a running gag from the hilarious 1980s film "Airplane" (or maybe it was "Airplane 2") where the worried ground control people kept muttering about how the "boys on the board" weren't going to like the situation with the doomed plane, or would be upset, or whatever. Finally the movie eventually cuts to a shot of the said boys - a bunch of 10 year olds sitting around a big table and wearing business suits, smoking cigars and shouting, "SELL!" Soooo funny. The Munro family made references to the "boys on the board" for years after that. In fact it's still an ...
How much worry is enough?
January 23rd, 2011
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Posted by Karen
I went to a meeting this week of the Rare Disease Foundation (http://rarediseasefoundation.org). Among other things, the RDF runs a once per month support meeting for parents of kids with rare disorders. This month, we talked about opportunities for special needs kids to do recreational activities through the Starlight Foundation (www.starlightcanada.org). As part of the conversation, we turned to speaking generally about the uncertainty we as parents feel about how much our kids can handle - do they have the ability/the stamina/the concentration/the desire/safe enough conditions in which to do various things?
This is certainly by no means a problem restricted to kids ...
Miranda’s 6th birthday!
January 16th, 2011
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Posted by Karen
6 years ago yesterday, Miranda was born. Labour was short and she popped out at 5:40 PM with little fuss. I was SO delighted to have a gorgeous baby girl, and I'm still delighted with her...
It happened that yesterday we were able to have a party for Miss M right on the day of her birthday, which is a rare occurrence! This year we decided to have her first-ever party outside our house. We thought about it carefully and decided that a gymnastics party would be our best bet.
Right about now you may be scratching your head and thinking, "Gymnastics? ...
FOP on “Mystery Diagnosis” – ALL NEW!!
January 11th, 2011
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Posted by Suzanne
Get those DVRs ready!! "Mystery Diagnosis" is airing a brand new FOP episode tomorrow, Wednesday, January 12th on OWN (The Oprah Winfrey Network). Matt Horick and his family will share their journey to Matt's FOP diagnosis. Ashley Kurpiel's episode originally aired in March 2009 and had the highest episode rating "Mystery Diagnosis" has ever had. Just with Ashley's episode, the producers of Matt's story contacted us to use Erin's photos again. They still had all of Erin's CT scans, MRI scans, x-rays, and photos that we accumulated up until her diagnosis.
Just writing about tomorrow's episode I get the ...
April 23rd – International FOP Awareness Day
January 10th, 2011
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posted by Suzanne
April 23rd is a very exciting day for all of us in the FOP community. It marks the day when Dr. Fred Kaplan and Eileen Shore, PhD announced in 2006 that the FOP gene was discovered. I wish I could remember the exact story Dr. Kaplan shared with us when we toured the FOP lab at the University of Pennsylvania. He walked us over to the very desk and chair where the researcher was sitting when she found a difference in the ACVR1 protein. I want to say Dr. K was traveling at the time and there was ...
My article about FOP!!
January 9th, 2011
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Posted by Karen
Guess what folks, I'm a writer... This week, a piece I authored about Miranda and Fibrodysplasia Ossificans Progressiva was published in "Today's Kids in Motion", a Canadian magazine about kids with disabilities and special needs. OK, so this magazine doesn't have a huge readership - it goes mostly to pediatricians' and family doctors' offices - but still! Feels very cool.
Several months ago, my friend Carrie Connell, who is also the leader of our Canadian FOP Network (www.cfopn.org), found out about Today's Kids and noticed that they have a section in which they highlight a particular child and his or ...
