I used to hate public speaking. I could sing without batting an eye but take away the melody and I froze. I tend to think about this whenever I set out to deliver an oration on FOP.
You see, as one of the adult members of the Canadian FOP community (and with a background in theatre) I now find myself taking on the role of spokesperson and explaining FOP to a room full of strangers when such a figure is required.
This is what happened at the beginning of May. I set off for Montreal* to go speak at a corporate retreat held by Clementia Pharmaceuticals. I was actually thrilled to be asked to go speak to Clementia as I’ve nicknamed it (or specifically Clarissa Desjardins) my bizarre fairy godmother and who wouldn’t want to meet their fairy godmother?
My main goal was pretty simple: put a human face on the disease. I figured it was pretty safe to expect the company employees had at least a basic knowledge of the symptoms and physical effects of FOP, which meant I could bypass the (boring) medical/scientific definition portion, but textbook facts are a very small part of the full story. You need to meet people living with the disease to fully understand how FOP seeps into every aspect of your life and you need their knowledge to learn what it feels like to have the disease.
The text is here if you wanted to read it.
People were very receptive and I fielded questions both after my talk and at the party that night. And it is true that people want to know the more personal elements. (I think your bucket list for if/when FOP is cured is of high interest to everyone.) I’d like to believe I succeeded in giving a good portrait of the person behind the genetic defect.
I also got the inside scoop on how the trial is moving along. It’s all very exciting and positive and I can’t wait to see where the trial and the company goes from here. Yes, I’m being purposely vague. I’m pretty sure you’d all hate me if I made the wrong info public and the whole process was thrown in a blender as a result.
But I can tell you about Clementia itself. It’s a wonderful, growing company with a fantastic work atmosphere. Everyone at the retreat seemed heavily invested in the work the company was doing and keen to learn more about the rare disease their drug may help treat.
I was already incredibly fond of Clementia and had it near the top of my (short)list of reasons to not hate Canada, but they exceeded my expectations. Rest assured that in them we’ve got a really good partner in the fight against FOP.
*Side note to major airlines: If an extremely budget airline running out of Niagara Falls, NY, can figure out how to make outside plane boarding barrier free and not terrifying what the hell is your deal? Even though it was in the file that you needed the ramp (which, for the record, was pretty damn steep and if I’d been in a chair I would have slid out of it when going down the ramp) you couldn’t be bothered to set it up both times I needed to get on the plane.
The first time I took the risk and did the stairs. It was not fun. I managed but the experience was nerve-wracking. The second time we caused a bit of a delay by making them take out the ramp. So…fair warning to anyone taking Air Canada Rouge from Hamilton to Montreal. Get ready for some speed bumps.
You see, as one of the adult members of the Canadian FOP community (and with a background in theatre) I now find myself taking on the role of spokesperson and explaining FOP to a room full of strangers when such a figure is required.
This is what happened at the beginning of May. I set off for Montreal* to go speak at a corporate retreat held by Clementia Pharmaceuticals. I was actually thrilled to be asked to go speak to Clementia as I’ve nicknamed it (or specifically Clarissa Desjardins) my bizarre fairy godmother and who wouldn’t want to meet their fairy godmother?
My main goal was pretty simple: put a human face on the disease. I figured it was pretty safe to expect the company employees had at least a basic knowledge of the symptoms and physical effects of FOP, which meant I could bypass the (boring) medical/scientific definition portion, but textbook facts are a very small part of the full story. You need to meet people living with the disease to fully understand how FOP seeps into every aspect of your life and you need their knowledge to learn what it feels like to have the disease.
The text is here if you wanted to read it.
People were very receptive and I fielded questions both after my talk and at the party that night. And it is true that people want to know the more personal elements. (I think your bucket list for if/when FOP is cured is of high interest to everyone.) I’d like to believe I succeeded in giving a good portrait of the person behind the genetic defect.
I also got the inside scoop on how the trial is moving along. It’s all very exciting and positive and I can’t wait to see where the trial and the company goes from here. Yes, I’m being purposely vague. I’m pretty sure you’d all hate me if I made the wrong info public and the whole process was thrown in a blender as a result.
But I can tell you about Clementia itself. It’s a wonderful, growing company with a fantastic work atmosphere. Everyone at the retreat seemed heavily invested in the work the company was doing and keen to learn more about the rare disease their drug may help treat.
I was already incredibly fond of Clementia and had it near the top of my (short)list of reasons to not hate Canada, but they exceeded my expectations. Rest assured that in them we’ve got a really good partner in the fight against FOP.
*Side note to major airlines: If an extremely budget airline running out of Niagara Falls, NY, can figure out how to make outside plane boarding barrier free and not terrifying what the hell is your deal? Even though it was in the file that you needed the ramp (which, for the record, was pretty damn steep and if I’d been in a chair I would have slid out of it when going down the ramp) you couldn’t be bothered to set it up both times I needed to get on the plane.
The first time I took the risk and did the stairs. It was not fun. I managed but the experience was nerve-wracking. The second time we caused a bit of a delay by making them take out the ramp. So…fair warning to anyone taking Air Canada Rouge from Hamilton to Montreal. Get ready for some speed bumps.
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