I cant even imagine what this is like :(
Stay strong, you're amazing doing what you do.

Aww, thank you! I needed to hear that 💚

Out of curiosity *because diseases seam to just pop up left and right* what is FOP?

...There's a basic explanation in the submission description above, it's hard to miss.

Oh, I didn't see the description... Thought it was just link to the charity site. Upon reading the links in said site *that I didn't catch at first* I can honestly say that this looks like a horrible thing to go thru. Since this is life long I wish I could say that it will get better but I think the best thing I can say is that hopefully you live your best life while dealing with this and hope that you live long enough to recieve a treatment or cute for this ailment. Never the less I do wish you the best in all this

Yeah, it’s not getting better, all I can look forward to is a cure or proper treatment. The current drug trials (by several companies, they all want to be the first) are very promising, at least in mice models! The gene is 98% similar to humans. We’re going through human trials, but at least one the drugs were .. cancelled? It caused blindness, so, wtf.

Thanks for your comment, I appreciate it~

Thank you for sharing this, I'll have to see what i can work up to donate!

Stay strong and keep up the awesomeness 🖤

Thanks very much, any amount will help! 💚 It's getting more difficult but I try~

I'm broke but I can pray...take care.

hope one day it can be cured, i have read about this condition before and saw a documentary on Harry and Carol about it.

We’re getting pretty close! Several different drug trials have stopped or slowed down FOP bone in mice.

Harry and Carol deserve so much respect for what they’ve done. 💜

yes, both of them made significant contributions into helping to understand FOP, I was just reading about the mice studies, which hopefully will lead to breakthroughs for humans with FOP, and cure it.I first hears about it several years ago when I came across videos of the mutter museum and they talked about Harry, then recently saw a video called "Her Name was Carol Orzel" which was touching, especially when in 1995, she saw Harry's skeleton and decided then, she wanted to be with him when her time came,and to help keep teaching future generations of medical students,and how she always had a smile, that her skeleton still reflects that in way, anyway it was touching.