2014 FOP fundraiser, because the future is promising

Posted by Karen - May 25th, 2014

Posted by Karen

There is no consistently effective treatment for Fibrodysplasia Ossificans Progressiva. Every one of the roughly 3500 people with FOP faces the same prognosis – sporadic, intermittent soft tissue swellings will come and go, and in most of those swellings, tissue will be destroyed and replaced by bone. All this extra bone causes increasingly severe limitations of movement, a restricted ribcage with reduced lung capacity and a shortened life expectancy. My daughter Miranda, a happy, lively and intelligent 9 year old girl, is one of the people living with this condition.

Skeleton of Harry Eastlack, a man who had FOP.

Skeleton of Harry Eastlack, a man who had FOP. Sheets, ribbons and knobs of FOP bone are prominent and obvious in this famous skeleton.

Sometimes I daydream about a drug which could stop an FOP flare-up in its tracks… Assuming Miranda was blessedly no worse off than she is today, here’s what a drug would mean to us:

– Miranda could get surgery to remove the FOP bone which currently locks her shoulder joints and elbows firmly in place. It would then be possible to move her arms, and we wouldn’t have to worry about the almost complete lack of circulating air in her armpits, leading to risks of skin infection and breakdown. Additionally, maybe physiotherapy could restore to her the ability to use her arms to pull clothing on and off, giving her a lot more freedom and independence.

– Surgery could also possibly be done to remove the bony pieces along Miranda’s spine which are causing her backbone to bend out of shape, resulting in obvious spinal curvature.

– Perhaps most important of all, our family could breathe a sigh of relief and stop worrying about Miranda losing the ability to walk, chew her food (yes, jaws are often fused by FOP bone) and even to breathe.

Miranda, 2014

Miranda, 2014

I love this daydream, and return to it time and time again… And these days, the daydream is feeling more like it could become a reality. Because you know what? Our beloved FOP researchers at the University of Pennsylvania have announced their intention to put just such a potentially amazing drug to human clinical trials in the near future. Pre-clinical testing on this substance has apparently given the scientists much cause for optimism.  Just how near in the future might the testing begin? Get this – in the annual FOP research report, the UPenn group states that such trials could start as early as LATE 2014. In case you didn’t notice, that’s this year!!

More than anything in the world, I want that drug to go to clinical trials and turn out to be safe and effective. Of course, even if testing does get underway, there are no guarantees the drug will work as hoped. But, there’s a strong chance it will. And given these good odds, our family is determined to do whatever we can to help this process along…

All of which is why we’re doing a “Walk for FOP” on Saturday, July 26, 2014 at Baker Park in Calgary, Alberta. Yep, it’s your basic fundraiser where we collect donations for our Canadian FOP charity, the Canadian FOP Network, and then we go out and do a walk. We’ve done this event a few years in a row, but this year it’s going to be a little different – we’ve joined forces with another FOP family and are doing the Walk together with them!

Event Ts 28-07-2013 10-50-05 AM

My mom Helen and me, wearing the event T-shirts we made up last year.

Kathleen D is a lovely young woman with FOP who comes from a small town in Saskatchewan, and who, like us, has family in the Calgary area. Kathleen and her sisters and other family members are going to join with us for the Walk this year, and we are DELIGHTED to have them on board. I had the good fortune to meet Kathleen in 2013 at an FOP conference, and I immediately liked her very much.

Kathleen D 25-05-2014 10-18-21 AM

Our friend Kathleen

Another change this year is that we’ve actually got our own website – check it out at www.walkforfop.com. Yep, this website is just for our event, totally cool. It can handle on-line donations to our cause, and everything (oooh, ahh, oh!). It can even take donations aimed toward supporting a specific participant in the Walk. I’m quite excited about this new site.

If you can spare any money at all to donate to our Walk, we would be incredibly grateful to receive it. All donations will go to the Canadian FOP Network (www.cfopn.org), which has no staff and very little overhead, and so provides well over 80% of funds raised directly to FOP research.

So, getting down on my metaphorical hands and knees, now, and begging you… Please help us out with a donation! FOP is very rare and doesn’t have the exposure of conditions like cancer or diabetes, so research relies heavily on funds raised at events like these. We are extremely grateful for any and all donations.

Once again – to donate to our fundraiser, please go to www.walkforfop.com. Or, if you’d rather donate the old fashioned way (by cheque or cash), please contact me privately or by comment to this blog post.

Many thanks, in advance!

PS – Again this year, Owen and Miranda (our kids) are competing against me and my husband Pete to see who can raise more funds. To donate to either kids or parents, or to Kathleen, please go to our website and click on “Donate to Participant”. Go PARENTS! PARENTS PARENTS PARENTS!!!




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