Upcoming Webinar: Efficacy of Catena ®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne
Santhera will present results from its Phase III study with Catena ®/ Raxone® (Idebenone) in Duchenne during a webinar hosted by PPMD on Wednesday, October 15th at 12pm eastern. < div class="feedflare" > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=LO-MWqjFv_4:gHljN7x9nCY:yIl2AUoC8zA" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=yIl2AUoC8zA" border="0" > < /img > < /a > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=LO-MWqjFv_4:gHljN7x9nCY:qj6IDK7rITs" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=qj6IDK7rITs" border="0" > < /img > < /a > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=...
Source: Parent Project Muscular Dystrophy - October 1, 2014 Category: Neurology Source Type: news
Upcoming Webinar: Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne
Santhera will present results from its Phase III study with Catena®/ Raxone® (Idebenone) in Duchenne during a webinar hosted by PPMD on Wednesday, October 15th at 12pm eastern. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - October 1, 2014 Category: Neurology Source Type: news
BREAKING NEWS: MD-CARE Act Passed!
Today – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing can stop us. Today, the MD-CARE Act Amendments of 2014 passed! WE DID IT!! (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - October 1, 2014 Category: Neurology Source Type: news
President Signs MD-CARE Act Amendments Into Law
Thank you again to everyone in this community who helped advocate for the passage of this critical legislation! We couldn't be more proud to be on your team! (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 26, 2014 Category: Neurology Source Type: news
The MD-CARE Act: Reflections & Projections
Sometimes it is worth taking a moment to reflect so that as we continue to plan ahead we can learn from not only our mistakes, but our victories. Our advocacy initiatives continue to grow and we won ’t slow down. We can’t. And we hope you’ll join us as we continue to use our voice in D.C. < div class="feedflare" > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=QUrAp3st_K8:tSJobnw6W4k:yIl2AUoC8zA" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=yIl2AUoC8zA" border="0" > < /img > < /a > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=QUrAp3st_K8:tSJobnw6W4k:qj6IDK7rITs" > < img src="http://feeds.feedbu...
Source: Parent Project Muscular Dystrophy - September 24, 2014 Category: Neurology Source Type: news
The MD-CARE Act: Reflections & Projections
Sometimes it is worth taking a moment to reflect so that as we continue to plan ahead we can learn from not only our mistakes, but our victories. Our advocacy initiatives continue to grow and we won’t slow down. We can’t. And we hope you’ll join us as we continue to use our voice in D.C. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 24, 2014 Category: Neurology Source Type: news
Duchenne Newborn Screening
Our Duchenne community has therapies in today’s pipeline that will be most effective when administered early. Our formalized efforts to move towards Duchenne newborn screening began several years ago; our community push begins now. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 23, 2014 Category: Neurology Source Type: news
Upcoming Webinar: Prosensa Update about Drisapersen & Other Programs
UPPMD will host a webinar with Prosensa on Thursday, October 2 at 12 pm EDT. During the webinar, Prosensa will answer questions from the Duchenne Community and give an update. < div class="feedflare" > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=cvxqPJl_v7A:EYOYOuMQKFI:yIl2AUoC8zA" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=yIl2AUoC8zA" border="0" > < /img > < /a > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=cvxqPJl_v7A:EYOYOuMQKFI:qj6IDK7rITs" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=qj6IDK7rITs" border="0" > < /img > < /a > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=cvxq...
Source: Parent Project Muscular Dystrophy - September 22, 2014 Category: Neurology Source Type: news
Upcoming Webinar: Prosensa Update about Drisapersen & Other Programs
UPPMD will host a webinar with Prosensa on Thursday, October 2 at 12 pm EDT. During the webinar, Prosensa will answer questions from the Duchenne Community and give an update. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 22, 2014 Category: Neurology Source Type: news
Action Alert: Tell the Senate to take action on MD-CARE Act!
Congress has returned from their Summer recess and it is time to re-engage them on the MD-CARE Act! We need each member of our community to reach out to your Senators and urge them to tell leadership to bring the MD-CARE Act to the floor for a vote. Take action now! (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 10, 2014 Category: Neurology Source Type: news
PPMD Welcomes Annie Kennedy as Senior Vice President of Legislation & Public Policy
We are thrilled to welcome Annie Kennedy, our new Senior Vice President of Legislation and Public Policy! Annie joins PPMD after being with the Muscular Dystrophy Association (MDA) for 25 years, first as a camp volunteer and as an employee for the last 16 years. Annie ’s focus will be on advancing public policy, addressing transition issues for people with Duchenne, and working on newborn screening issues. < div class="feedflare" > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=EjNvAkukrfQ:OjK3bN2tnvY:yIl2AUoC8zA" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=yIl2AUoC8zA" border="0" > < /img > < /a > < a hre...
Source: Parent Project Muscular Dystrophy - September 10, 2014 Category: Neurology Source Type: news
PPMD Welcomes Annie Kennedy as Senior Vice President of Legislation & Public Policy
We are thrilled to welcome Annie Kennedy, our new Senior Vice President of Legislation and Public Policy! Annie joins PPMD after being with the Muscular Dystrophy Association (MDA) for 25 years, first as a camp volunteer and as an employee for the last 16 years. Annie’s focus will be on advancing public policy, addressing transition issues for people with Duchenne, and working on newborn screening issues. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 10, 2014 Category: Neurology Source Type: news
PPMD Submits Cardiac Recommendations to FDA
During discussions at a working group meeting designed to explore contemporary issues in Duchenne cardiology, the FDA indicated interest in receiving recommendations for cardiac surveillance and cardiac markers, to be included in current and future Duchenne clinical trials. In response to those questions, recommendations were developed by the Expert Working Group and submitted to the FDA for consideration for inclusion in the draft guidance. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 10, 2014 Category: Neurology Source Type: news
End Duchenne eNews: Awarding Grants, Recognizing Progress, Welcoming Leadership
Catch up on the latest research and community updates in this month's End Duchenne eNews. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - July 16, 2014 Category: Neurology Source Type: news
One Step Closer
Progress! Today the House Energy & Commerce committee voted unanimously to advance H.R. 594, the MD-CARE Act Amendments of 2014. This action moves the bill to consideration and hopefully passage by the full House of Representatives. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - July 15, 2014 Category: Neurology Source Type: news
