Walk for FOP, 2018 edition!

Posted by Karen - June 24th, 2018

Hello friends! I’m excited to announce to you – wait for it – the Alberta Walk for FOP 2018!

As in previous years, the Munro/Friz and Degenhardt families are joining together to raise funds benefitting the Canadian FOP Network (www.cfopn.org). The Canadian FOP Network is a charity which raises funds in support of research into fibrodysplasia ossificans progressiva, as well as provides support for families living with FOP in Canada.

Our Walk takes place on the August long weekend, specifically Sunday, August 5, at Baker Park in Calgary (time TBA, but it’s always in the afternoon). We warmly welcome you to come and join us for our Walk/bike ride around the park, followed by a fun and relaxing barbecue picnic. In previous years, 2014 through 2017, we’ve always had an absolutely wonderful time, and have been proud to raise funds for a cause so close to our hearts.

We walk in honour of Kathleen and Miranda. Kathleen is a young woman who has FOP who lives in a small town in Saskatchewan. As far as we know, Kathleen is the only FOP person in her province! Kathleen lives with her parents on a lovely farm, and works remotely doing medical transcriptions.

Kathleen and Miranda, 2 Canadians with FOP, at our 2015 event.

Kathleen and Miranda, 2 Canadians with FOP, at our 2015 event.

Miranda is 13 years old and lives in a suburb municipality of Vancouver, BC. Miranda has just finished grade 7, and is about to start a new adventure as she heads off to high school. She plays percussion in her school band, and enjoys sci fi and action hero movies, as well as reading young adult fiction. Miranda is, to the best of our knowledge, one of only 3 people in BC with FOP.

I’ve commented on the prevalence of FOP patients in Kathleen’s and Miranda’s home provinces… In fact, the grand total of FOP patients in Canada known to the Canadian FOP Network is, I think,  18. That’s a really, really small number of people, so small that a fundraiser run by even one FOP family makes a tremendous difference to the amount of funds which the Canadian FOP Network is able to provide for FOP research. But hey, what about the rest of the world? Well, the last number I heard was just over 1,000 known patients, though the global total is estimated at 3,500 based on western world prevalance (let THAT sink in… close to 3/4 of FOP patients are unknown and possibly undiagnosed). So again – if we don’t raise funds for our cause, who will?

Despite the rarity of FOP, money for FOP research is being put to tremendously good use. Every year, the FOP research lab at the University of Pennsylvania comes up with important new findings, so much so that by 2018, there are 3 (!) clinical trials ongoing into potential FOP medications, and a number more on the horizon. There is a great deal of interest in a potential medicine for FOP, because it’s believed that a drug which treats rogue bone formation will one day also lead to new treatments for osteoarthritis, heart valve calcification, and ossification at the site of limb amputations.

Despite how far we’ve come, there’s still a long way to go… As of yet, there is still no approved medication to treat FOP available anywhere. There is NOTHING we want more than to reach that finish line.

And finally, the pitch – we would be ever so grateful to receive your donation to our cause. To donate online, go to www.walkforfop.com and click on “General Donations”. You can also send us a cheque, if you prefer (also good for larger donations, to help us avoid the correspondingly larger credit card processing fees for such donations). Please help us reach our goal of raising $20,000!

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