I need FOP fundraising ideas!

Posted by Karen - September 27th, 2009

Before I had a child diagnosed with Fibrodysplasia Ossificans Progressiva, I wasn’t much into fundraising for anything…  I did it when I had to,  if a friend or family member roped me into participating, but that was about it (and I didn’t put a whole lot of energy into it).

Now, however, fundraising has taken on a whole new importance.  To put it as plainly as possible, I HAVE to fundraise for research into a cure or effective treatment for FOP.  There’s very little available right now to treat FOP, and the medications which do exist have very limited application and effectiveness.  And, FOP is severely disabling in the long term – if a medication for FOP doesn’t become available, Miranda will end up being largely immobilized in her adulthood.

Because there are so few people in the world with FOP (about 700 known, 3500 estimated), the scientists who study it rely in large part on private donations from affected families to fund their research.  FOP isn’t cancer, or arthritis, or diabetes with millions of sufferers and thus lots of dollars from pharmaceutical companies being poured into developing financially lucrative drugs.  If the FOP community itself doesn’t raise money, there ain’t a whole lot coming from elsewhere…

When Miranda was first diagnosed, one of the many things which preoccupied me was the question of whether fundraising was even worthwhile: with so few people in the world affected by FOP, was there enough research going on to move things even remotely toward a cure?  Would fundraising for such research be an exercise in futility?  That was a big fear for me.

As it turns out, however, it seems there IS quite a bit of research going on into FOP.  In the middle of it all is the Center for Research into FOP and Related Disorders at the University of Pennslvania (AKA the “FOP Lab”).  At the FOP Lab, researchers discovered the gene which causes FOP and are hard at work unraveling the FOP process which causes ossification and testing ways to block the process.  I’ve talked to those researchers in person and have learned that they are VERY optimistic that they are going to figure out a solution to the FOP problem in the coming years.  In fact, it seems there’s a strong possibility an FOP drug will be available while Miranda’s still pretty young (OK, maybe not while she’s in primary school, but if we’re lucky, it could be as early as during her teen years).

Amazingly enough, however, we don’t even need to put all our FOP eggs in just that one basket…  Other than the FOP Lab at UPenn, it turns out there are at least 3 other research centres working hard on FOP or issues very relevant to FOP.  For instance, there was recently an announcement by a different research group in Philadelphia that they’ve used a pharmaceutical substance to largely block heterotopic ossification (as the bone-forming process is called).  That particular group was studying ossification in soldiers injured at war, but there’s good reason to think their findings will be applicable to FOP.  Here’s a link to an article about their work:


To make a long story short, here’s the situation:

  1. FOP is severely disabling and has almost no treatment at present.
  2. FOP is extremely rare, so families and sufferers need to fund research to stop FOP.
  3. Raising funds is not just throwing money into the wind – there are a number of labs studying FOP, and very good progress is being made at developing medications for FOP.

In recognition of all this, I’ve been working hard with Carrie Connell of London, Ontario (Canada) to help realize her dream of creating a Canadian charity to raise funds for FOP research.  I’m glad to say we’re getting close…  Chances are very good that we’ll have a newly minted FOP charity to announce in the near future; probably before the end of 2009.  Once we have the new charity registered, we’re going to discuss ways to raise funds in as large a scale as possible, and try to set up some kind of annual fundraising event.

But back to me here at home, in suburban Vancouver…  I want to do some kind of small-ish scale fundraising event in the near future.  Something I can do maybe at home, or at least locally, and scare up a few hundred dollars (or more??) toward the cause.  My friend Suzanne recently held such an event at her house in Seattle, where an evening’s sales of PartyLite candles resulted in a nice donation to the International FOP Association.

Unfortunately, though, I’m just not very creative…  I need ideas!  If you have any ideas for such small-scale fundraising events which I could do in the near future, let me know.

I really must do something, and start now…  Her future depends on it.


Miranda, summer 2009, age 4.5 years.

3 Responses to “I need FOP fundraising ideas!”

  1. table top sale, collect toys ,clothes bric a brac etc .See if family will donate bottles of wine unused gifts etc for a raffle. The last one we done raised £680

  2. Heidi says:

    I know there are recycling programs for ink cartridges that donate the funds to a charity or research. In fact, there was one in particular for FOP. That is how I found your website because I was looking to reorder a recycling kit. Didn’t find it yet, but found your site. Hope this helps! The International group has some tips for fundraising. http://www.ifopa.org

  3. regina says:

    Hello there I’m from a small town in washington state and I have a son with FOP. Not much younger then your little girl. He will be 8 this year in august. Can you please tell me how school affected you and your family as well as your daughter. As a mom I’m struggling with who I can talk to about all of this.

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