More Friends with FOP

Posted by Karen - August 23rd, 2015

On Thursday of this past week, I had the great pleasure to meet up with my friend Steve, an adult who has fibrodysplasia ossificans progressiva, and his wife Nancy (OK, she doesn’t have FOP, but is obviously a part of our community). They live in Texas, which is a very long way from here indeed, but were on summer vacation and happened to find themselves in Burnaby, BC, where I and my family live. Their vacation sounds pretty great – they were in the Vancouver area for a few days, and then were off to catch a passenger train through the Rocky Mountains with a destination of Jasper, Alberta (note to self, do that trip on a train one day).

Nancy and Steve.

Nancy and Steve.

Steve is somebody I “met” (well, electronically) in 2007 in the early, early days of my then-2 ¬†year old daughter Miranda’s diagnosis. He was one of the first adults to demonstrate that FOP was not, in fact, necessarily a predictor of a terrible, unliveable future. Since that time, Steve has been very friendly and a great source for many things, including every day life “hacks” for FOP, conversation about the science around various FOP discoveries and cooperation on IFOPA committees. We met in person briefly in late 2013 at the International FOP Association’s 25th Anniversary celebration in Florida, but didn’t have much time to talk. Our meeting this week was a great opportunity to get to know each other better.

Steve is a very smart dude – he has a master’s degree and finished most of a PhD as well, and currently works for the municipality in the city where he lives. He’s also got lots of great stories about life with FOP, including at one point having had to endure an almost full-body cast, and then a few months later after it was removed, biking through the Colorado Rockies. Steve has let FOP interfere with his life to the minimum degree possible, and as a result, he’s had a pretty good life – a life which includes meeting and marrying his wonderful wife Nancy. Nancy is a warm and friendly person, and obviously also very intelligent. Steve and Nancy seem to have a happy marriage.

If it should come to pass that, for whatever reason, none of the current medications being investigated for FOP are successful, my hope for my daughter Miranda is that she lives a life which is as eventful, interesting and full of love as Steve’s has been.

I really enjoyed our get together, which ended up lasting far longer than I had predicted – Steve, Nancy and I just had so much to talk about.

Me with Nancy and Steve.

Me with Nancy and Steve.

Here’s hoping they have an amazing and enjoyable trip across the Rockies.

 

PS:

1. If you’d still like to donate to our summer FOP fundraiser, but just haven’t gotten around to it, there’s still time! You can donate online at www.walkforfop.com, or else contact me and I’ll tell you how to donate via cheque.

2. If you have FOP, you may qualify to take part in one of two initiatives underway right now by Clementia Pharmaceuticals – the current Phase 2 testing of the potential FOP drug Palovarotene, or else the FOP Natural History study. Both involve some short term travel to a site where the program is being carried out, but not to worry because Clementia pays all travel costs, even if your FOP is tricky and involves special travel arrangements. For more information about either of these things, see the IFOPA website at www.ifopa.org.

3. Another FOP thing going on right now is the IFOPA’s patient registry. This is an on-line registry in which FOP patients complete questionnaires to flesh out the history of their experience with FOP. In the longer term, information from the registry will help researchers in the quest for effective treatments. For more information, again see the IFOPA website at the link noted above.

No Comments so far, be the first to add one.



Leave a Reply