Started this discussion. Last reply by Tina Tsonis Oct 18, 2013. 25 Replies 0 Favorites
If you had a chance to ask researchers, providers or industry any question at all about…Continue
Tags: questions, conference, Staff, Duchenne, researchers
Posted on April 19, 2018 at 9:30am 0 Comments 0 Favorites
PPMD and NIH are convening a group of more than 60 researchers, post-docs, neurologists, surgeons, industry partners, physiatrists, and physical therapists on April 19-20, 2018, who have experience and expertise in the development, prevention, and management of contractures to discuss these critical issues.
We just don’t know very much about…
ContinuePosted on April 11, 2018 at 9:30am 0 Comments 0 Favorites
Just like a house needs a stable frame, your body needs a stable skeleton. Bone health is important for anyone living with Duchenne, whether walking (ambulatory) or those no longer able to walk without the assistance of a wheelchair or scooter (non-ambulatory). People of all ages living with Duchenne have weak bones, especially if they are taking steroids…
ContinuePosted on March 27, 2018 at 9:00am 0 Comments 0 Favorites
PPMD is proud to announce the publication of a collective statement regarding patient access to approved therapies from the center directors of our Certified Duchenne Care Centers.
There are many ongoing treatment trials for Duchenne and of…
ContinuePosted on March 13, 2018 at 9:30am 0 Comments 1 Favorite
Pulmonary management in Duchenne (all of the care involved with breathing and coughing) can be confusing and difficult to understand. There are many terms, abbreviations, and procedures that all sound very complicated. PPMD – with support from Santhera Pharmaceuticals and input from a panel of parents,…
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hi kathi its the new drug i have issue with spelling eleplrin , that the fda has not approve yet. my question is that drug will it help the boys that are in wheel chair. kimmy
hi kathi my name is kimmy watters thank you for what you do for parent project,. with this new drug will it our boys who are now in wheelchair. kimmy