“This week in FOP news…”

Posted by Karen - June 10th, 2012

Posted by Karen

I don’t have any grand theme for today.  Instead, am just going to ramble about a few different things which happened recently in the world of Fibrodysplasia Ossificans Progressiva…

This week the winners of the 2012 “Jeannie Peeper Awards” were announced.  The JP Awards are named after Jeannie Peeper, a wonderful woman who has FOP and who founded the International FOP Association.  The JP Awards are granted by the IFOPA each year to up to 4 individuals or groups who have contributed in an exceptional way to the FOP community.  There are 4 awards – the President’s Lifetime Achievement Award (kind of self-explanatory), the Outstanding Community Involvement Award (in recognition of a major contribution to FOP awareness and/or fundraising in the last 5 years), the Emerging Leader Award (for a person with FOP under age 30 who had a noteworthy accomplishment) and the Outstanding International Leadership Award (for someone outside the USA who has worked hard for the FOP cause).

I had the honour of chairing the selection committee this year – TOTALLY fun job.   :-)  The winners of the awards are really an impressive bunch, and I am eternally awed by them and grateful for their efforts.  To read about the award recipients – Nick Bogard, Christine Flexer, Stephanie Snow and Marie Hallbert, respectively, click on the following link:  http://www.ifopa.org/en/news-and-events/jeannie-peeper-ifopa-awards.html.  I haven’t met Nick, Christine or Stephanie, but I have met Marie, who is from Sweden, and I count her among my friends.  Here’s a picture of me and Marie together at an IFOPA sponsored event a couple of years ago…

The Jeannie Peeper Awards were news in the FOP community this week, but a couple of people with FOP made the news in the general media as well.  First, the McKean family of Ohio were in their local TV news this week with their story about their daughter Ali, age 5, and her recent diagnosis with FOP.  To see the interview with the McKean family, who are very keen to spread awareness of FOP, see the following YouTube video clip:

http://www.youtube.com/watch?feature=player_detailpage&v=uJb7Op8A1F8

Ali’s family have also started up a website to support their daughter, which you can find at http://www.alis-army.org/.

Kyle McWilliams, a young man with FOP, also was featured in a news story this week.  It seems that Kyle is an avid golfer, and the local paper in his town did a story about him and his golf partner.  You can read the article about Kyle here:  http://www.desmoinesregister.com/article/20120610/NEWS03/306100031/1004/NEWS02/?odyssey=nav%7Chead.  Go Kyle!  I’m always totally glad to see people with FOP enjoying sports and recreational activities just like everyone else.

What about at our house?  This week Miranda performed in her school concert, along with the rest of her grade one class.  They sang Cat Stevens’ “Morning Has Broken”, and it was unbelievably sweet to me.

OK, so this isn’t Miranda on the date of the concert, but I just really like this picture!

PS – Please donate to our Canada Helps GivingPage in support of our Ride to Cure FOP on August 4, 2012.  To make a donation, go to www.canadahelps.org, click on GivingPages and enter “Friz/Munro family”.  Thanks!  We are grateful for anything you can contribute.

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