Posted by Karen
‘Tis the time of year to do countdowns, lists, reviews, etc of all and sundry which happened in the previous 12 months. And so, with that theme in mind, here’s what happened in respect of Fibrodsyplasia Ossificans Progressiva in our household in 2009…
First, and most importantly, I can say with relief that a very significant thing DIDN’T happen – in 2009, Miranda had no new joint fusions. Phew…! I am delighted that she made it through the the year with little happening by way of FOP activity in her body. Yes, Miranda had a handful of smallish flare-ups on her torso, but all of that was pretty minor and occurred in the first eight months of the year (nothing at all in the last four months!). Hopefully 2010 will be like 2009 in that regard, or maybe even better.
2009 began with me obsessing over the application for registered charity status which our new Canadian FOP group, the Canadian FOP Network, needed to submit to the Canada Revenue Agency. It took a while to complete the form, which was multi-pages in length and required LOTS AND LOTS of detail. Finally, after much blood, sweat and tears, I got it out the door in late January or early February.
The next thing which happened, some time in the spring (can’t recall exactly when), was that my dear dad, Miranda’s grandpa Malcolm Munro, was elected to the board of the International FOP Association. I was really thrilled that Dad was willing to take on such an important role, with so much meaning to our family. I’m certain my father is doing an excellent job as a board member, as witnessed by him rapidly becoming the vice-chair of the board, and later its secretary. I think my dad has brought a good perspective to the board, being one of the few non-American board members in its history. In fact, later in the year he wrote an interesting and important article for the group’s newsletter, the FOP Connection, about FOP groups and their leaders in different parts of the world. Great work, Dad!
At the end of May 2009, Pete and I and our two kids flew to London, Ontario, where the Canadian FOP Network was holding its first ever FOP conference and family meeting. My mom and dad and Pete’s sister Anna also met up with us in London. Our president, Carrie Connell, was the driving force behind this conference, and I’d have to say she did well over 90% of the preparatory work for it (it helped that she lives in London and works in the facility where we held the event, but still…). The conference was wonderful, with detailed presentations by our dear Dr. Fred Kaplan and Eileen Shore of the “UPenn Centre for Research into FOP and Related Disorders”, as well as by other medical and research specialists.
This event also marked the first time I and my family had met adults with FOP. I wasn’t sure how it would be. Would I feel sad? Stressed for the future? Overwhelmed? In fact, none of that happened. I remember the first adult I met, a young Canadian man with FOP. This is going to sound silly, but I wanted to give him a hug and jump up and down for joy. I felt a sense of euphoria; a mix of happiness that I was finally meeting with our “peeps”, relief that this fellow was so at ease in the world (despite his physical limitations), and eagerness to dive in and get to know our Canadian community.
Anyway, I think the conference was a big success, and I have to give a very big thank you to our president, Carrie, who did so much hard work to put it all together. I think it was an excellent first official event for our group.
Just about a month later, at the end of June, I flew to New Jersey to attend an FOP mothers retreat hosted by the legendary Amanda Cali. Amanda is an amazing woman, well-known in the FOP community as the mother of Ian Cali, now a college student with FOP, and also a driving force behind the development of the FOP centre at UPenn. Amanda was the gracious host to seven women at her lovely home. With the exception of Amanda, who had come to our Canadian meeting (and who’s help had been invaluable), I hadn’t met any of these moms before. This wonderful four day weekend was both very relaxing and tremendously emotionally cathartic. It was amazing to share experiences with these others moms of children with FOP… For once, everyone in the room really got my day-to-day life dealing with my child’s FOP. My only regret about the event was that my friend Suzanne McCloskey, Erin’s mom, hadn’t been able to attend.
In the summer, we heard back from the Canada Revenue Agency on our CFOPN charity status application (6 months probably sounds like a long wait, but in fact I’m told it’s often several months more!). We were dismayed when the CRA rejected our application. Denied!! We were, however, determined to become a charity, and so contacted the CRA to find out what we need to do to reach our goal. We learned that we hadn’t been rejected because we were deemed unworthy, or innappropriate to be a charity, but rather because we hadn’t been exactly precise enough in the information we had provided with our application (my bad, but in defence I have no legal experience with charity law). So, we jumped through a few hoops, revamped our applixation and submitted an appeal, and were both relieved and thrilled when the CRA granted our application and made the CFOPN a registered charity effective in September 2009. Hooray!
September was also the month in which I took Miranda and her brother Owen down to Seattle for a weekend to visit with the McCloskey family (Pete had to be away on business during that time). Suzanne held a “PartyLite” event that weekend to sell candles and accessories and raise funds for the International FOP Association. The party was a success, and raised a nice amount for the IFOPA. I also had the opportunity at that event to meet Sarah Steele and her mother for the first time; Sarah is a young woman with FOP living in Redmond, Washington (I think? my apologies if I got it wrong). During the party, Miranda and Erin kept us all amused by building a huge pile of stuffy toys in the McCloskeys yard – too funny.
I think that pretty much rounds out the list of major events during the year. Throughout all of this, Miranda played, laughed, went to pre-school, made poop and fart jokes with her brother , and did all the things a 4 year old typically does.
I think 2010 will be a quieter year than 2009; we don’t have any major events planned. However, that will be just fine too. Mainly I’m just hoping for another good year, and hopefully some more advances on the research front (oh yeah, there were some of those too in 2009, but I just don’t have room to discuss those here).
Happy New Year, everybody!