News Update - eNews

End Duchenne eNews: Connect - It's More Than Just a Conference

Catch up on the latest research and community updates in this month's End Duchenne eNews!
May 15, 2015 | Learn more 

News Update

PPMD’s Connect Series: Bringing Together You & the Experts

We are excited to present the latest events in PPMD's Connect Roundtable hosted by our FACES groups and our Train the Trainers series! This summer and fall, PPMD will convene roundtables covering research updates and the latest care concerns, as well as physical therapy workshops to provide training to therapists and families… all in your own backyard! Check out the schedule for these exciting new Connect series events.
May 12, 2015 | Learn more 


Newly Updated Vaccination Recommendations

As you know, PPMD works very hard to keep you as up to date as possible. Sometimes those updates come very quickly, as has recently happened with recommendations for vaccinations. While we just recently published a new “altered vaccination schedule,” discussions with the Centers for Disease Control and Prevention (CDC) have again updated the recommendations for vaccinations for people living with Duchenne.
May 7, 2015 | Learn more 

News Update - Science

PPMD's 2015 Connect Conference Agenda: Now Available!

PPMD is excited to share the agenda for our 21st Annual Connect Conference in Washington, D.C., June 18-21. Every year our agenda grows and expands to include more of the topics you and your family are the most interested in. This year is no exception, with more research, care, and advocacy updates than ever before!
May 6, 2015 | Learn more 

Thank You!

Thank you for making the launch of PPMD’s Robotics Initiative such a huge success! In less than three weeks, we raised $165,400 to support innovative technology that we believe will benefit all people with Duchenne. Thanks to your generosity, we can support more projects and new work in assistive technologies. Thanks to you, PPMD can continue to look ahead at the full progression of Duchenne.
May 5, 2015 | Learn more 

News Update - Science

The “Let’s Get Them Moving” Workshop

PPMD joined Duchenne stakeholders from around the world in a special one-day meeting to discuss robotic technology and the potential it holds for our community. PPMD together with UPPMD gathered the best and brightest robotics experts and engineers who are working to apply their innovations to Duchenne. We discussed the variety of technologies currently in development technologies that inspired PPMD to launch our Robotics Initiative earlier this spring. Annie & John shared reports from the historic meeting.
April 29, 2015 | Learn more 

News Update - Science

BioMarin Completes Rolling NDA Submission to FDA for Drisapersen for Treatment of Duchenne Amenable to Exon 51 Skipping

The Duchenne community should celebrate. Today, Biomarin submitted the rolling NDA on drisapersen. This means we now have a second NDA submitted for Duchenne. Santhera is likely to follow soon. By first quarter 2016, we may see 3 approved drugs with more to follow. This is exactly what we have been working for, hoping for.
April 27, 2015 | Learn more 

News Update - Researchers

PPMD Awards $148,000 Grant to University of Washington

Exon skipping and gene replacement are leading candidate therapeutics in the Duchenne space right now. It is our hope that Dr. Froehner’s project will help improve decision making in the design and targeting of both exon skipping oligonucleotides and gene therapy vectors so that patients receive the best therapy possible and the chances of approvals in a timely manner are increased.
April 21, 2015 | Learn more 

News Update

Webinar Recording: FOR-DMD Study

The recording of our webinar on the FOR-DMD study (developing standardized corticosteroid treatment for Duchenne) is now available. Included in the webinar is an overview of the aims of the FOR-DMD study, along with a discussion of why the study is particularly relevant in regard to current/future Duchenne clinical trials.
April 17, 2015 | Learn more 

News Update

Webinar Recording & Summary: Orthopedic Complications in Duchenne

If you missed our webinar on Orthopedic Complications in Duchenne (covering contractures, scoliosis, & fractures), you can now access a recording of the webinar online. Summary notes and responses to additional questions we received during the webinar are also available.
April 3, 2015 | Learn more 

News Update

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.
March 21, 2015 | Learn more 

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News Update2015 Connect Conference

June 18-21, 2015 in Washington, DC

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