November 2013
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IMG_0457
1 Favorite
September 2013
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IMG_4351
1 Favorite
Celebrant with DMD
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Celebrant with DMD
2 Favorites
August 2013
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1 Favorite
July 2013
Sarepta Therapeutics announces plans to submi
Today is a landmark day for the entire Duchenne community. Not too long ago, the Duchenne therapy landscape was a barren field with little to no life. Thanks to a commitment to our…
Blog
Sarepta Therapeutics announces plans to submi
1 Favorite
7.9.13: Update from PPMD/FDA Meeting
July 9, 2013.
PPMD met with Dr. Janet Woodcock and leadership from the Office of New Drugs, Medical Policy and the Division of Neurology Products, as well as, staff from…
Blog
7.9.13: Update from PPMD/FDA Meeting
2 Favorites
Talking About Duchenne
Guest post by Ivy…
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Talking About Duchenne
3 Favorites
June 2013
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How did you talk to your son about DMD?
My son Henry, 5 years old, was diagnosed in December. He thought the bloodwork that we had done would help the doctors fix him so he could play soccer and swim...his words. ( I didn't know why we wer…
Discussion
How did you talk to your son about DMD?
1 Favorite
May 2013
Continuing the Quest for Accelerated Approval
Wading through policy is no easy task. But imagine policy as the white lines on the road, the boundaries within which FDA operates. Building our case, showing how Duchenne fits into those white…
Blog
Continuing the Quest for Accelerated Approval
1 Favorite
P19
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P19
1 Favorite
Drisapersen Update webinar with GSK
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Drisapersen Update webinar with GSK
3 Favorites
April 2013
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March 2013
Here's our little Ben!
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Here's our little Ben!
1 Favorite
February 2013
Ataluren Webinar
Last night I watched the recording of the Ataluren webinar, held on January 17, 2013. Excuse me for not sounding particularly upbeat about it. I know that PTC and everyone at PPMD are doing as best t…
Discussion
Ataluren Webinar
3 Favorites
January 2013
Webinar: Ataluren Update with PTC
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Webinar: Ataluren Update with PTC
7 Favorites
October 2012
The Global Genes Project
Jeans. Genes. Thursday night, I changed from jeans into a blue dress – as in…
Blog
The Global Genes Project
1 Favorite
July 2012
Co-Blog with Ivy Scherbarth On Mothering
Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will…
Blog
Co-Blog with Ivy Scherbarth On Mothering
4 Favorites
November 2011
Co-Blog: To Have and Have Not with Duchenne
Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started…
Blog
Co-Blog: To Have and Have Not with Duchenne
3 Favorites
