NBS

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.
October 1, 2014 | Learn more 

President

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!
September 26, 2014 | Learn more 

MDCA

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.
September 24, 2014 | Learn more 

NBS

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.
September 23, 2014 | Learn more 

eNews Advocacy

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.
September 22, 2014 | Learn more 

eNews Advocacy

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!!
September 18, 2014 | Learn more 

Seattle Children's' Hospital

PPMD Names Seattle Children's Hospital Certified Duchenne Care Center

Seattle Children's is the fourth center to be certified by PPMD, recognizing the hospital's dedication to improving care for people living with Duchenne. 
September 17, 2014 | Learn more 

News Update - eNews

End Duchenne eNews: Here to Help

Catch up on the latest research and community updates in this month's End Duchenne eNews, and learn how you can help us tackle Duchenne!
September 15, 2014 | Learn more 

Annie Kennedy

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.
September 9, 2014 | Meet Annie 

News Update

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.
August 18, 2014 | Learn more 

Pulmonary

The Breath of Life: New 3-Part Pulmonary Webinar Series

The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker. Like the heart, every person with Duchenne will have pulmonary issues of some type. This is such an important area of care and concern that we pulled together pulmonary experts from across the US to address important issues during a webinar series this fall.
August 12, 2014 | Learn more

 
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Pat's Blog

Pat's BlogMD-CARE Act Passed!

Today September 18, 2014, our Duchenne community once again made history by demonstrating that nothing can stop us.

September 18, 2014 | Read more


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