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Mike O
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  • Sammamish, WA
  • United States
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Mike O's Discussions

Etiplersen will cost $300,000

Started this discussion. Last reply by Andrew Kerr Sep 23, 2016. 1 Reply

Continue

Telling his classmates about DMD

Started this discussion. Last reply by Brenda Sep 2, 2016. 1 Reply

In an effort to address his limitations and keep him safer, we have elected to have our son talk to his second grade class about his diagnosis. Any advice for telling this age group about DMD? I've…Continue

Why a ‘miracle’ drug exists but you can’t have it yet

Started this discussion. Last reply by Lynne Nicholson Nov 15, 2014. 1 Reply

Thought you all might be interested in this article from MosaicContinue

Ice bucket challenge

Started this discussion. Last reply by Judy Lumbourne Nov 18, 2014. 3 Replies

I'm sure many of you noticed that ALS foundation recently got some wonderful publicity (and presumably more funds). It'd be awesome if DMD community could come up with an idea that would gain similar…Continue

 

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Latest Activity

Andrew Kerr replied to Mike O's discussion Etiplersen will cost $300,000
"I think it was relatively well known that almost nobody was going to be able to afford this drug out of their own pocket.  It will be insurance companies (or government in some countries) that will be paying the bill."
Sep 23, 2016
Mike O posted a discussion

Etiplersen will cost $300,000

http://www.marketwatch.com/story/at-300000-a-year-sareptas-new-drug-is-considered-a-steal-2016-09-20Great that the FDA finallly got out of the way on etiplersen..but discouraging that it will be so expensive that almost no one can afford itSee More
Sep 22, 2016
Brenda replied to Mike O's discussion Telling his classmates about DMD
"have the teacher play this video  https://www.youtube.com/watch?v=6wLnR7GJakY"
Sep 2, 2016
Mike O posted a discussion

Telling his classmates about DMD

In an effort to address his limitations and keep him safer, we have elected to have our son talk to his second grade class about his diagnosis. Any advice for telling this age group about DMD? I've seen a ton of materials for teachers but nothing that says what a good message is for kids and how our son should deliver it.Any suggestions would be welcome.Thanks for any help and thoughts go out you to all of your boys.See More
Oct 26, 2015
Mike O replied to Marks33's discussion Access to Translarna - a lego movie
Feb 11, 2015
Judy Lumbourne replied to Mike O's discussion Ice bucket challenge
"Hi You can try one of our ideas from this website: http://www.erank.tv/sponsors. This can be better than ice bucket challenge."
Nov 18, 2014
Lynne Nicholson replied to Mike O's discussion Why a ‘miracle’ drug exists but you can’t have it yet
"Thanks for this. Great summation for somebody that is completely new to DMD.."
Nov 15, 2014
Mike O posted a discussion

Why a ‘miracle’ drug exists but you can’t have it yet

Thought you all might be interested in this article from MosaicSee More
Nov 11, 2014
Crissy Zitzer replied to Mike O's discussion Ice bucket challenge
"That would be great if we could come up with something to raise awareness for MD.  I don't really know anything about ALS or know anyone who has it, but everyone is talking about the ice bucket challenge and posting about it all over…"
Aug 19, 2014
kimmy watters replied to Mike O's discussion Ice bucket challenge
" i am going to this challenge no matter what if. als can raise  15.6 million  dollars so can we. kimmy"
Aug 18, 2014
Mike O posted a discussion

Ice bucket challenge

I'm sure many of you noticed that ALS foundation recently got some wonderful publicity (and presumably more funds). It'd be awesome if DMD community could come up with an idea that would gain similar popularity. See More
Aug 18, 2014
Mike O posted a discussion
Feb 21, 2014
Mike O is now a member of PPMD Community
Oct 11, 2013

Profile Information

Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Seattle
State:
WA

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