I would be willing to bet you've never heard of F.O.P. please read.

[auntAgonist]

http://ir.biocryst.com/news-releases/news-release-details/biocryst-begins-phase-1-trial-bcx9250-oral-alk-2-inhibitor

https://www.ifopa.org/what_is_fop

My nephew has it. It is incurable and there are few ppl in the world with it. It's horrible, painful and life shortening.

[Bluepinky]

1. I'm sorry your nephew has FOP, had never heard of it.☹️

[auntAgonist]

6. Thank you for reading and for your kind words.

[samnsara]

2. Im so sorry...(((hugs)))

[auntAgonist]

7. Thank you for reading and for your kind words.

[Pachamama]

3. I had heard of this condition but didn't know the name....its truly awful..

So sorry to hear that your nephew has this condition. Will he be participating in the trials that you are mentioning here?

[auntAgonist]

5. I don't know yet if he's eligible. He's fairly well along in the disease.

He has pretty much NO mobility and 'sits' reclined in a specially designed chair.
I do know that he's going to Florida to meet some researchers and Drs and others who are afflicted with the disease.


Thank you for your kind words.

kesha.

[RKP5637]

4. Had not heard of it, thanks for posting. OMG, it is truly dreadful. So sorry to hear your nephew has

it.

[auntAgonist]

8. Thank you for reading and for your kind words.

[captain queeg]

9. Sorry to hear about your nephew

I’d not heard of this condition either. Sounds like not much can be done but I see you are looking into trials, hope something comes of that.