The best, latest news so far from Clementia!

[Blight]

Yesterday, Clementia Pharmaceuticals announced they were funded $10 million from their investors to continue their progress on the trial drug for FOP! They’ve also revealed that now they’ve opened headquarters to create the trial drug in the US.

The full article is here, at IFOPA, but I essentially paraphrased it. 😀 This is fantastic, amazing news and speedy progress/advancements and outside interest, giving us FOPsrs more hope,

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do you have fop? Now you have me curious, but i shouldn’t ask a bazillion questions like a want to.

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[Blight]

Yes, my twin sis and I have FOP.

[Kim]

Wow, I haven’t heard of that until now but I hope it can help those of you who have it!

Looking for rainbow or pink & teal grab bags!

[jmoore]

Goodness, I had never heard of that condition before, either! All my best to you and your sister!

[rock-reader]

I’ve heard of this disease before and I am so sorry for you and your sister. My bests wishes to you both for a successful drug trial that leads to an early cure.

[siberakh1]

That’s great news! I hope they are able to make progress! A classmate from college, her younger sister has FOP I believe. She has been unable to walk since sometime in high school and was already losing the ability to move her arms properly at that time if I remember correctly. A treatment or cure would be marvelous!

I didn’t realize you were a twin as well. 🙂

[Blight]

Thanks for all the wishes 🙂

Yeah, hopefully the trial study will keep improving, Clementia is happy with how its going so far! The clinics are only based in the US, and I think one in Europe though. My sis and I aren’t eligible for it though in any case.

[Rachel]

I hope that you are able to get a treatment that helps slow or stop this. I’ve heard of FOP. It’s a very interesting disease, though I’m sure from your perspective “interesting” isn’t the word you’d use.

[Blight]

We’re all excited over the trial drug because it’s successfully halted FOP in different mice models with FOP,

That’s a common misconception now, as FOP isn’t a disease, it‘s a genetic disorder. What we desperately want to stamp out though is the incredibly offensive (and incorrect, in all ways) the nicknames/ideas of Stone Man, Medusa Syndrome, Human Mannequin, Statue, etc.

FOP’s getting more recognition thanks to Hollywood; Grey’s Anatomy, Bones, Ridley Scott’s Tell-Tale flick, Stephen Fry, etc, (they still got facts wrong, except for Mr zfry who is a speaker for Friends of Oliver) but the media keeps sensationalising FOP as a freak show disease and giving wholly inaccurate info =(

[Author]

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