Friends With FOP

Posted by Karen

Very recently, an adult friend of ours with FOP started his own blog.  I’m seizing this opportunity to tell you about it and also about some other websites and blogs featuring Fibrodysplasia Ossificans Progressiva.

The guy who started the new blog is called Nick Mahler.  His blog has a great title – “The Crooked Guy”.  The by-line is, “Viewing the world from a different angle.”  If you aren’t familiar with FOP, you might not get this joke, so I’ll spell it out – FOP often causes scoliosis and atypical body postures (particularly over the longer term), so this is good double entendre.   Anyway, Nick is a man in his 30s who lives in Texas with his wife, who does not have FOP, and he’s led a life full of fun and adventure.  Nick has only just gotten started out with his blog, but I think it’s got great potential and I wish him very good luck.  If you want to check out Nick’s blog, go to www.crookedguy.com. 

My friend Saskia Blonk has also started a website about her experiences with her son, Yorick, who has FOP.  Yorick is about a year or so older than my daughter Miranda.  Yorick’s situation is complicated by the fact that in addition to FOP, he also has Asperger’s Syndrome, a form of high-functioning autism.  The Blonk family lives in the Netherlands, so this website is in Dutch, but it does have a section translated into English.  Our family had the good fortune to get to know the Blonks in the spring of 2009 when they travelled to Canada to attend the first conference of the Canadian FOP Network.  To see Saskia’s website, go to www.geneesfop.nl. 

Yorick, who broke his arm at our conference (yikes), with his dad Erling.

Still on the topic of international websites, another good one is that of the Swedish FOP group, FOP Sverige.   The FOP Sverige site is run by a terrific gal called Marie Hallbert, whose son Hugo Fahlberg has FOP.  Hugo is about 11 years of age right now.  Marie doesn’t have a blog on this site, but she’s kept it up to date with events of FOP Sverige.  She also has a number of photos depicting Hugo over the years and how FOP has affected his body.  I was lucky enough to meet Marie and become friends with her during the summer of 2009 when she and I both attended an FOP mothers’ retreat.  You can find the FOP Sverige website at www.fopsverige.se.

Me and Marie in New Jersey

Finally, a third international site I can refer you to is a called “FOP Action”, and is from the UK.  This site is run, I believe, by the Sanderson and Hopdale families, whose daughters Jasmine and Rachel both have FOP.  This site contains some interesting profiles of Jasmine, Rachel and other British folks with FOP.  That site is at www.fopaction.co.uk. 

Here in North America there are a few other sites to take a look at.  Check out the Weldon family’s site at www.weldonfop.org,  the “Hayden’s Hope” benefit website at www.haydenshope.com and “Bingo for a Cure” at www.bingoforacure.com.  These are all feature either a specific FOP fundraising event or campaign, though they also contain bios of, respectively, Whitney Weldon, Hayden Pheif and Joshua Scoble (all of whom have FOP, natch). 

For comprehensive information about FOP, probably the best source is the International FOP Association at www.ifopa.org.  The IFOPA site contains FOP treatment guidelines, and many resources for learning about FOP.  The Canadian FOP Network, of which I am a board member, also contains useful information, and some profiles of Miranda and other Canadians with FOP.  That site is at www.cfopn.org.  

And finally, last but not least, is our very own website, “Friends With FOP”.  If you’re reading this as a Facebook note, then maybe you don’t know about it, and I invite you to check us out at www.friendswithfop.com.   Our site contains lots of cute photos of my Miranda and her friend Erin McCloskey of Seattle, as well as blogs and other info by both me and Suzanne McCloskey (Erin’s mom, obviously).

Erin McCloskey and Miranda

Happy web surfing!