August 2016
[Upcoming Webinar] PTC Therapeutics Provides…
event
[Upcoming Webinar] PTC Therapeutics Provides…
1 Favorite
June 2015
Mojiz Zaidi speech in union elementary schoo…
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Mojiz Zaidi speech in union elementary schoo…
1 Favorite
April 2015
Webinar: FOR-DMD Study - Developing Standard…
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Webinar: FOR-DMD Study - Developing Standard…
1 Favorite
March 2015
Recall Notice for Deflazacort 30mg (UPDATED 12/14/15)
[NOTE: This blog has been updated as recently as December 14, 2015. Please see the 'UPDATE 12/14/15' section below for more…
Blog
Recall Notice for Deflazacort 30mg (UPDATED 12/14/15)
2 Favorites
February 2015
Access to Translarna - a lego movie
Please view and share this lego movie about the work in the UK being undertaken by the Duchenne community to get access to the drug
<a href="https://m.youtube.com/watch?v=b8QAGR41BWA">https://m.youtube.com/watch?v=b8QAGR41BWA</a>
Discussion
Access to Translarna - a lego movie
4 Favorites
January 2015
No Choice...Part One
This is my first post to my new blog. I have another blog named “dadsfavoriteword” that has given me the chance to share my life’s experiences as a dad, husband and friend using one word that…
Blog
No Choice...Part One
2 Favorites
September 2014
PTC expands global presence
<a href="http://www.marketwatch.com/story/ptc-therapeutics-expands-global-presence-in-support-of-translarna-launch-in-duchenne-muscular-dystrophy-2014-09-17">http://www.marketwatch.com/story/ptc-therapeutics-expands-global-presence-in-support-of-translarna-launch-in-duchenne-muscular-dystrophy-2014-09-17</a>
Discussion
PTC expands global presence
1 Favorite
Tayjus
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Tayjus
3 Favorites
August 2014
PTC's Translarna
Anyone has any idea when Translarna is coming to the pharmacists in the EU?
Discussion
PTC's Translarna
1 Favorite
Just breathe
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Just breathe
1 Favorite
Cost of Translarna
With PTC's Translarna now approved for sale in the EU,i hope we get to know soonest how much it will be selling at.
Discussion
Cost of Translarna
1 Favorite
May 2014
PTC gets EU approval
<a href="http://ir.ptcbio.com/ReleaseDetail.cfm?ReleaseID=850246">http://ir.ptcbio.com/ReleaseDetail.cfm?ReleaseID=850246</a>
PTC THERAPEUTICS RECEIVES POSITIVE OPINION FROM CHMP FOR TRANSLARNA™ (ATALUREN)
- The first treatment for the underlying cause of Duchenne mus…
Discussion
PTC gets EU approval
2 Favorites
A Good Day for Duchenne
EMA grants Conditional Approval for Ataluren
…
Blog
A Good Day for Duchenne
2 Favorites
March 2014
Contemporary Cardiac Issues in Duchenne Muscular Dystrophy
We all know that the heart is a muscle too! Most people and parents living with Duchenne feel that care for the heart, as defined by the…
Blog
Contemporary Cardiac Issues in Duchenne Muscular Dystrophy
2 Favorites
January 2014
He's getting ready to ask me "the" question.…
Hi all, I have a feeling my son Kyle is getting ready to ask me what is going on with him. He was diagnosed at age 5 and he is now 10. We haven't "hidden" anything from him, but we have not sat hi…
Discussion
He's getting ready to ask me "the" question.…
2 Favorites
December 2013
ATALUREN CLINICAL DATA DEMONSTRATE AN INCREA…
<a href="http://ir.ptcbio.com/releasedetail.cfm?ReleaseID=813493">http://ir.ptcbio.com/releasedetail.cfm?ReleaseID=813493</a>
Discussion
ATALUREN CLINICAL DATA DEMONSTRATE AN INCREA…
2 Favorites
No Gower's due to Drisapersen? Stop the halt!
video
No Gower's due to Drisapersen? Stop the halt!
3 Favorites
100_0259
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100_0259
1 Favorite
November 2013
Grateful for you
2013 has been a year of incredibly high highs and incredibly low lows. Sometimes those lows have overshadowed all the highs—and for good reason. It’s impossible to put into words how devastating…
Blog
Grateful for you
4 Favorites
Tired
I am tired of it.
This life, this day.
Fess…
Blog
Tired
6 Favorites
Time to Unite & Rally
Yesterday was a disappointing day for all parents, grandparents, aunts, uncles, and others touched by Duchenne. Like most of our community, I awoke to the news that multiple factors…
Blog
Time to Unite & Rally
1 Favorite
