New(ish) FOP websites

Posted by Karen - October 13th, 2012

Posted by Karen

A while ago I did a post about other Fibrodysplasia Ossificans Progressiva websites.  It’s time to update that now with another…  I have some very good ones to tell you about now.

I’ll start with the fundraising juggernauts…  The families who run the next three websites completely amaze me.  These are folks who have made really, REALLY impressive efforts to raise money for FOP research.  Unsurprisingly, all three have a beloved child with FOP.

First, check out http://www.joshuasfop.com.  This website is run by the family of Joshua Scoble, a 5 (or maybe now 6?) year old boy with FOP.  For a few years now, Joshua’s family has been working extremely hard to raise funds to help our research scientists cure FOP.  They’ve run an annual bingo for at least 3 years now which seems to get bigger and bigger each year, and actually I’ve lost track of how much money these folks have raised…  But suffice it to say that the grand total is well into the 6 figures.  (wow)  This past year, Joshua’s aunt Christine Flexer, who has been a driving force behind the Joshua’s Future of Promises organization, was awarded with the International FOP Association’s Jeannie Peeper Award for Oustanding Community Involvement in recognition of her efforts.  Definitely a well-deserved award.

Next we have a website concerning Zip Gordon.  Zip is a boy a little bit younger than Josh Scoble, and in the recent past his family hosted a major fundraiser which, on it’s own (one single fundraiser!) brought in over $100,000 for FOP research.  This absolutely blows my mind.  You can read about Zip’s family’s fundraiser at their website http://zipperq.com.  It may have helped that they did a draw in which the top prize was a brand new beautiful truck…  (!)

Last but certainly not least in this bunch we have a site concerning little Sienna Otto.  Sienna is a super-cute little blonde toddler with FOP.  When you click on her site and see her, I defy your heart not to melt…  Her site is at http://www.thesiennafoundation.org.  Despite Siennna’s FOP being quite recently diagnosed, Sienna’s family whipped together this website and an incredible swim-a-thon fundraisier involving the Princeton University Women’s Swim Team.  I understand their fundraiser ALSO brought in close to 100K.  Another amazing effort.

Now we come to websites of families working very hard to generally raise awareness of FOP.  First, the McKean family runs the Ali’s Army website at http://www.alis-army.org in honour of their daughter, sweet 5 year old Ali McKean.  Ali is also quite recently diagnosed, and her family has made a mission out of spreading the word about FOP.  The family has appeared on television to speak about their experience with FOP, and they have a thriving Facebook and Twitter presence.  They also sell Ali’s Army promotional clothing.

The Black family also have a little girl with FOP.  Their daughter Addi is, I think, just a bit older than Sierra Otto, and was diagnosed in 2011.  Addi is another little cutie who you can read about at her family’s website at http://fopjourney.blogspot.ca.

Finally, for a bit of international flavour, I come to the website for the Swedish FOP organization, FOP Sverige.  At http://fopsverige.se, my friend Marie Hallbert does a regular blog about her family’s experience with their teen son, Hugo, who has FOP.  Yes, Marie’s blog is in Swedish, but she has a handy link to Google Translate right there on the site, so no worries if you don’t speak Swedish.  Marie has been working hard for many years to raise awareness of FOP, and she was also recognized this past year with a Jeannie Peeper Award for Outstanding International Leadership.  Marie is a wonderful lady whom I was privileged to meet in 2o09.

I am so impressed by all of the families I’ve commented on above.  These are some very hard-working people, and I really want to applaud them.  It’s the cummulative results of efforts by people like these which will help our FOP researchers keepworking on medicines for FOP.  A treatment for FOP can’t come soon enough for Joshua, Zip, Sienna, Ali, Addi, Hugo, my daughter Miranda, her friend Erin and all the other children and adults in the world with FOP.

And now, just because I never like finishing a blog post without sticking in a cute picture, check out my little sweetie Miranda posing in her new Halloween costume…

 

 

2 Responses to “New(ish) FOP websites”

  1. Angela says:

    Thank you Karen, you failed to mention the good that you do, including being there for all of us when we need advice, have questions, or just an ear to vent to. Thank you for being there for our family.
    <3 Angela

  2. Amber says:

    This is sort of off-topic, but I love Miranda’s costume!



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