I am so not good at…

Posted by Karen - June 16th, 2013

…Fundraising.  In fact, one might say that I’m pretty pathetic at it.  Big old lameosaurus, that’s me.

Yes, I suck at it, and yet I can’t throw my hands in the air and give up.  I am compelled to fundraise because of how breathtakingly close we are to clinical trials for drugs to treat fibrodysplasia ossificans progressiva (FOP).

Our dear Miranda, our reason for FOP fundraising

I blogged last weekend about the Canadian FOP Network’s conference the week before.  At that conference, we heard from the amazing scientists at the University of Pennsylvania about the pace of research for effective treatments.  In a nutshell – things have progressed to the point where the experts are actively PLANNING how to bring certain drugs to clinical trials!  In fact, a substance called Palovarotene has been licensed by a Canadian (yes, Canadian) drug company, Clementia Pharmaceuticals, in collaboration with the UPenn FOP research centre; if all continues to go well, this drug will be ready for clinical trials in a handful of years.  Another substance, Dorsomorphin, is being developed by scientists at Harvard and Vanderbilt Universities to also hopefully begin trials in the near future.

Things are looking so good, and it’s been so fast…  When my daughter Miranda was first diagnosed with FOP in 2007, the genetic mutation which causes the disorder had just been discovered the year before.  There was lots of hope and optimism, but really nothing concrete.  Here we are just 6 years later, with at least 2 specific potential medicines in advanced stages of pre-clinical studies.  And the word is, further, that if those don’t pan our for some reason, there are even several other drug candidates which have been identified for investigation.  Eeeep!!!  It’s all so good.  I feel like hyperventilating.  Of course, drug testing doesn’t mean a guarantee of effective treatment…  But if you follow hockey, you may be familiar with the statement, “You miss 100% of the shots you don’t take.”  Those researchers are trying hard, and if we want a chance at an FOP medicine, we have just got to support them.

Which comes to me…  Earlier this year, I was buoyed up with enthusiasm.  I saw phenomenal fundraising efforts by the Gordon, Otto and Wheelock/Gambaiana families in the USA, the FOP Action group in the UK and of course the Herce and Connell families in Canada with their Ride to Cure FOP event, and I was raring to go.  My family and I have done fundraising efforts in the past, it’s true; for the past 2 years we also did the Ride to Cure FOP (funds benefiting the Canadian FOP Network, which in turn supports the UPenn FOP research team).  But, in the past my family’s and my efforts were fairly modest and small scale – we raised funds from family, friends and well-wishers, and we picked a day to ride bikes and/or walk to show our devotion to the cause, along with as many of those family/friends/etc as we could interest in accompanying us.  This, year, I thought, why don’t I ramp this up!  I could hold a Ride and Walk to Cure FOP event, but this year I could encourage our supporters to set up their own fundraising pages!  I could get corporate sponsorships and food donations (for the picnic afterward), and make it a big deal like the Herces and Connells have done!  I was going to do this in the summer, when we always do our one major fundraiser for the year.  Wow, it sounded so great…

And then, guess what, I didn’t get organized in time.  D’oh!!  If I was going to do all this during the summer, which is also when the other Canadian groups have done their events, I should have gotten my act together early in the spring and started moving on the plans.  But, we ended up doing a Make-A-Wish trip to Florida in March, and in April, I had to do a 2 week trial (I am a lawyer), and then in May, Miranda and I travelled to the Canadian FOP Network conference in London, Ontario.  In the midst of all that stuff, I simply dropped the ball.  And that, my friends, illustrates the manner in which I suck at fundraising (NOTE – my husband Pete sucks as bad as I do – and he freely admits it).

But, all is not lost…  There’s still time to do a fundraiser this summer.  In short, we’re going to do the same thing we did last year.  And so:  This is the official announcement – we’re going to do a “Ride and Walk to Cure FOP” on Sunday, July 28, 2013 at Calgary’s Baker Park!  In an effort to do something a little different, though, this year we’re going to do a parents vs. kids fundraiser – Pete and I have our own Giving Page and Owen and Miranda have theirs.  Let’s see who can raise the most money!   Please please please support the parents or the kids with a donation…  Go to www.canadahelps.org, select “Giving Pages” and type in either “Karen and Pete” or “Owen and Miranda”.  And, if you’re in Calgary on July 28, come join us for a fun day of bike riding or walking at Baker Park, with a picnic to follow.  More details coming soon…

Some of the Ride to Cure FOP 2012 Calgary folks!

2 Responses to “I am so not good at…”

  1. Wendy Henke says:

    Hi, Karen, and HAPPY FATHER’s DAY to Pete.
    Just want to say THANK YOU for all you do for the FOP community. We FOP families all wish we could do more, but as you pointed out, LIFE has to go on, too. So, just like our loved ones with FOP so beautifully adapt, so shall we.

    Like you, I had plans for a BIG event. I’d done six successful ones since Justin’s diagnosis in ’06, but it wasn’t in the cards this year. We started planning in November for a May event, but by end of January, when 3 important puzzle pieces still weren’t in place (all out of my control,) I knew we needed to change ‘course’, as it were.

    It was the best decision, and one we will build upon next year. Instead of hosting our own event, we formed a couple of running teams, who donned Cure FOP shirts and ran in a local distance festival, which included a full marathon, a half-marathon, 4-person and 8-person relay teams. BTW, a 8-person team only requires each member to cover 3.28 miles – very doable! Perhaps you could look for one in your area? We ran among thousands who had never heard of FOP; great conversations were had along the way and FOP awareness was raised. Prior to race day, we each also collected pledges, so we raised a decent amount for the IFOPA, too:-)

    Compared to hosting our own event, I appreciated that our family’s life was not disrupted in the least. You see, since we don’t have any family in the area (everyone lives at least a plane-ride, or two, away!), all the planning falls on my shoulders; friends, of course, help, but there’s no substitute for family. I look longingly at FOP families or any families, for that matter, that get to experience life with their parents, siblings, cousins, aunts & uncles nearby.

    Needless to say, arriving at the event, I appreciated that all the port-a-potties, tents, race organization, and food was in place; I slept great the night before! Also, at the event, I appreciated being surrounded and cheered on by friends, and that our enthusiastic camaraderie caused others to inquire about FOP. Sparking interest, our sharp-looking running T’s (by RunningBanana.com) caught people’s attention, with a large image of Harry Eastlack’s skeleton and http://www.CureFOP.org on the front & back.

    All-in-all, it was a win-win-win. We raised money; we raised FOP awareness among thousands of strangers; and our family got to fully enjoy life leading up to, and at the event. It was a tremendous blessing.

  2. Stacy Scoble says:

    Love your blogs!!! Good luck with the fundraising, you can do it……:)



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