“LUCKY” to have FOP?

Posted by Karen - May 26th, 2013

Posted by Karen

OK, of course everything’s relative.  Obviously I don’t mean that anyone is lucky, period, to have Fibrodysplasia Ossificans Progressiva.  That bit is pretty much the opposite.  What I mean is that in comparison to the situation for many, many other rare diseases, people with FOP are lucky.

Here’s what I mean…  One of the biggest problems faced by people with most rare disease is that there are no cures, no treatments, and not even any research going on.  If you’re a scientist and you could research, say, cancer, which afflicts millions of people, or a rare disorder that has a few hundred or thousand sufferers, which way are you going to go?  So, in many cases, symptomatic treatment for rare disease is as far as it goes.  A little while ago, I met a woman with a disorder which is 10 times more common than FOP, though it still counts as rare, and she told me that to her knowledge (and she’s looked into the matter), there’s almost nobody in the world researching her condition and not even any organized non-profit group for those with the disorder.  FOP, on the other hand, isn’t like that at all.

Amazingly for a condition which is confirmed to affect only 800 people (though about 3500 are suspected worldwide),  there are well-establishes laboratories (yes, that’s plural) working hard to find treatments for FOP, and they have made incredible progress.  There are actually two science facilities in the world (Philadelphia, USA and Oxford, England) completely devoted to researching FOP, and a surprising number of other labs at universities which also do related work.  Researchers have uncovered the genetic basis of FOP and are currently engaged in pre-clinical studies of at least 2 or 3 different compounds with promise for treating FOP.  The future looks pretty rosy for a medicine for FOP within the next 10 years.  Additionally, there are a number of established not-for-profit organizations in the world which raise money for FOP research and which provide opportunities for people with FOP to connect, get to know each other and share information.

Why is the situation so different for FOP?  One important factor is Ms. Jeannie Peeper of Florida, USA.  Jeannie is an adult woman with FOP, and over 25 years ago, she developed an itch to get to know others with FOP (there were no FOP groups at the time).  Jeannie got the ball rolling, and before long, she had founded the International FOP Association.  Today, the IFOPA is a well-established charity which provides hundreds of thousands of dollars each year for FOP research.  But for Jeannie, FOP might be much like so many other rare disorders, with nothing happening.

Just this week, the Atlantic magazine published what I think is a very well-written and fascinating article about Jeannie, the IFOPA and research into FOP.  The article also talks in general about the difficulties in getting research going for rare disorders.  It’s an interesting read, and you can check it out here:  http://www.theatlantic.com/magazine/archive/2013/06/the-mystery-of-the-second-skeleton/309305/

Because of my daughter Miranda’s FOP, I will forever be grateful to Jeannie and to the scientists who study FOP.

I mentioned above that there are now a number of FOP organizations world-wide.  One of them is here in Canada, where I live.  Our group is called the Canadian FOP Network.  Unsurprisingly, the IFOPA provided our founder, Carrie Connell (mother of a girl with FOP) with the ability to make contact with other Canadian families (thanks again, Jeannie Peeper), and a few years ago our group got charity status.  As it happens, next weekend we’ll be running a conference about FOP in London, Ontario.  I can’t wait!  Events like this create great opportunities for FOP families to meet each other, which is something we can usually only do over the internet.  In addition to the fun of socializing, we’ll also get to hear presentations about the latest research by important scientists from the FOP lab at the University of Pennsylvania, which is the biggest FOP facility in the world.  Yay yay yay!

While the focus of our conference is Canadians with FOP and their families and caregivers, we also welcome people from outside Canada.  It’s not too late to register, so if you’re interested, go to:


And, because no blog is complete without a photo, here’s one of me, Miranda and Dr. Fred Kaplan of UPenn at our last Canadian conference in 2009 (Miranda was 4 years old).  Miranda’s cheeks are bulging because she had just stuffed in some chocolates which Dr. Kaplan had given her (LOL).

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