Upcoming Webinar: Orthopedic Complications in Duchenne
To address the issues of contractures, scoliosis, and fractures, we have elicited the assistance of three experts to join us for a webinar on Tuesday, March 31st, 1:00-2:00 EDT.
Recapping the FDA-NIH Dystrophin Methodology Workshop
PPMD CEO, Dr. John Porter, recaps the FDA and NIH dystrophin methodology workshop. This was an important moment for the Duchenne community and PPMD was honored to be a part of it. Thank you to all the families who came to the meeting.
PPMD Participating in FDA-NIH Dystrophin Methodology Meeting on Friday, March 20
PPMD is grateful that the FDA and NIH are willing to discuss dystrophin and have opened their doors to include our community leaders.
If you would like to attend Friday’s public scientific workshop, or watch a live stream of the meeting, view details here.
End Duchenne eNews: Prepare to Connect
Catch up on the latest research and community updates in this month's End Duchenne eNews!
Dollars Destroying Duchenne
PPMD loves creative, out-of-the-box fundraisers that raise awareness. This new, annual event from Davenport, FL is a great example of something you can do in your community. Read organizer Diana Rodriguez’s story and don’t hesitate to reach out to us with your own ideas!
PPMD's 2015 Connect Conference Registration Open
This year, 2015, marks our 21st Connect Conference. With the Duchenne landscape changing in so many ways, this year's meeting will help you understand the nuances of Duchenne including the latest in research and care, open communication channels between thought leaders in the field, and lay the groundwork for future collaborations.
Spring Forward: Bringing the MD-CARE Act to Life
After months of outreach to congressional champions and visits to Capitol Hill, the MD-CARE Act Amendments were passed and signed into law in the end of 2014. Now the real work of implementation actually begins. On Tuesday, March 17, the MDCC will be taking the first formal step to bring the MD-CARE Act Amendments to life and our community will officially Spring forward!
What is Epicatechin?
Epicatechin. It’s a word that is starting to pop up more and more in the Duchenne community. But was is it? PPMD helps explain this exciting potential therapy now in the early stages of development.
Recall Notice for Deflazacort 30mg
If you receive this recall notice and/or think that you may have an affected batch (J021 [expiry 30/06/2017] or J028 [expiry 30/09/2017]), you should contact your provider and ask them to replace it with a prescription for prednisone to take until you get your new batches of deflazacort. Do not take deflazacort that is part of the affected batch. As more information becomes available, we will share it with the community immediately. If you have any further questions call your neuromuscular provider.