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Started this discussion. Last reply by David Jun 11, 2015. 9 Replies 0 Favorites
Are there any families on here who's sons are in the eplerenone trial. I was curious if they would share any results they are seeing. I spoke by email with one father and the results to this point…Continue
Started Dec 16, 2013 0 Replies 0 Favorites
I was working and unable to listen to the web cast of this meeting. Does anyone know what the comments Janet Woodcock made concerning Sarepta's regulatory path? There is alot in the financial…Continue
Started this discussion. Last reply by Chris Diemler Jun 5, 2015. 6 Replies 0 Favorites
I am disgusted with the FDA's suggestion to Sarepta that they include a placebo group in their next trial. I wish they could find a way to conduct these trials with out putting our sons through that.Continue
Started this discussion. Last reply by Andrea Cleary Nov 12, 2013. 1 Reply 0 Favorites
Hello, my son is 6 years old and in the 1st grade. They have a P.E. unit coming up which is the physical fitness test. Does anyone have any ideas they have used to subsitute for a unit like…Continue
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StaffPat Furlong said…
really nice to meet you Chris. Please feel free to email me directly Pat@parentprojectmd.org
Sure -- but you probably know more than I do! My email is firstname.lastname@example.org
Hi Chris, thank you. I am very glad to talk to u. I hope that I could share and gain experience from u in terms of taking care DMD children.
There hanging in there my older brother is hanging on and being very strong and my little brothers still mobile so that's something to be happy about my moms also being very strong with the whole situation thanks for asking hows your son doing?
Chris, Quinten is doing well. We are approaching the 7 year anniversary of Quinten's diagnoses, so life is about to get crazy busy with our annual/semi annual appointments. He has really been struggling with being board lately. He does not like to go out in the cold, and it is a lot of work to get all bundled up to go outside (not to mention trying to move around in all of those clothes). I need to post, to get some ideas. How is Henry doing?
'Yes, Chris, I hope so as well, although we all get busy with life and of course our families! Thanks, cheers'
Thank you so much!
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