Friends With FOP

Posted by Karen

OK, you had to see it coming…  Hot on the heels of my blog last week summarizing the 21st annual Fibrodysplasia Ossificans Progressiva research report, here’s what my family is doing to support the drive for a cure: we’ll be doing the “Ride to Cure FOP” in support of our FOP charity in Canada, the Canadian FOP Network.

What’s the Ride, you ask?  A couple of years ago, the Herce family of Ontario and some friends did a bike ride from Toronto to Niagara Falls to raise money for FOP research; their Ride to Cure FOP was in honour of Valerie Herce, who is in her 20s and has FOP.  Valerie’s sister, Vanessa, planned the Ride with the the modest goal of raising $500 – and instead, the group raised a whopping $33,000!  Buoyed by their success, the group repeated the event last year and did even better, raising a phenomenal $40,000.  They’re doing it yet again this year too, on July 21 (though I believe their route has changed this time around).

Last year, the Herce group also agreed to allow groups in other areas of Canada to do their own versions of the Ride, and so our family got in on the fun.  We did  the Ride to Cure FOP at beautiful Rocky Point Park in Port Moody, B.C., in honour of our Miranda, now age 7, and we had a great time doing so (lucked out with a gorgeous sunny day for our event).  We rode our bikes and hiked on the park’s bicycle trails, and capped it up with a fun barbecue picnic.

Our team of riders and walkers in 2011

One of my fave pictures from last year, Miranda and our cousin Julianne.

Our Ride was a terrific experience, and we decided to do it again this year as well.  At least one other Ontario group will also be doing its own version of the Ride.

Initially we thought we’d do the 2012 Ride again at Rocky Point Park.  However, various issues conspired against us gathering a similar size group  (9 people) to what we had last year, so we pondered what to do…  And then, my husband Pete suddenly said, “Why don’t we just delay our Ride a couple of weeks and do it in Calgary while we’re on summer vacation?”  I was initially a bit reluctant to do our event on a different day than the other groups, but I could see the advantages of the idea…  My parents, sister and brother, sister-in-law, nieces and nephew all live in Calgary, not to mention some aunts and uncles, a bunch of cousins and some childhood friends - in other words, potentially a sizeable bunch of people who might be available to join us on the big day.  And so, we made the decision to do our Ride to Cure FOP this year in Calgary, Alberta on Saturday, August 4.  Our specific site for the Ride is yet to be determined – I’m open to suggestions, Calgary folks…

Supporting research to find a way to treat or cure FOP is so very important to our family.  We’ve got a wonderful little girl who is smart, funny, cute and full of life, but FOP is robbing her of the ability to move.  Over the past 5 years, FOP has transformed muscles in Miranda’s back, neck, shoulders and elbows into bone, locking her joints partially or fully in place.   She has to be careful every day, lest a minor trauma cause an FOP flare-up leading to new bone formation.  Unless scientists can find a way to stop FOP, this horrible process is going to continue for the rest of Miranda’s life.  Re: halting the process of FOP – see my blog from last week - researchers are so close!  If we continue to push, a drug to treat FOP could be a reality within the next few years.

Please help make our Miranda’s future as bright as it can be, and support our Ride to Cure FOP (details about how you can donate coming soon!).