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Sun Nov 3, 2019, 07:24 AM

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

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.

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Response to auntAgonist (Original post)

Sun Nov 3, 2019, 07:31 AM

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

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Response to Bluepinky (Reply #1)

Sun Nov 3, 2019, 05:29 PM

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

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Response to auntAgonist (Original post)

Sun Nov 3, 2019, 07:34 AM

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

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Response to samnsara (Reply #2)

Sun Nov 3, 2019, 05:30 PM

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

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Response to auntAgonist (Original post)

Sun Nov 3, 2019, 07:37 AM

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?

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Response to Pachamama (Reply #3)

Sun Nov 3, 2019, 05:28 PM

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.

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Response to auntAgonist (Original post)

Sun Nov 3, 2019, 08:58 AM

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

it.

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Response to RKP5637 (Reply #4)

Sun Nov 3, 2019, 05:30 PM

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

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