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Duchenne Pulmonary Care for Tweens and Teens (Webinar Summary & Recording)

Posted by Kathi Kinnett on November 6, 2014 at 10:00am 0 Comments

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…

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Would you be surprised if we were to tell you that it takes an average of 10 years and one billion dollars to yield a single new therapy, and that many of our nation’s leaders admit that our scientific and clinical institutions and the agencies that regulate them are set up in an antiquated and inefficient way? Probably not, yet none of us in the #Duchenne community has that luxury of time or money. But there is a sign that the tide could be turning.…

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Annie Kennedy posted a blog post

21st Century Cures: A sign that the tide could be turning

If I were to tell you that it takes an average of 10 years and one billion dollars to yield a single new therapy – would you be surprised? Probably not, yet none of us has that luxury of time or money.If I were to share that many of our nation’s leaders admit that our scientific and clinical institutions and the agencies…See More
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Today, BioMarin Pharmaceuticals announced that it will acquire 100% of Prosensa. As Pat said in today’s press release: “BioMarin has a successful track record of developing new therapies for people with devastating disorders and for effectively collaborating with health authorities and patient communities. We look forward to working with BioMarin to bring new treatments to boys with Duchenne and other forms of muscular dystrophy.” With this news comes question. Pat has…

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The Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) has been 8 years in the making and has the support of more than 85% of Congress; please help us get it over the finish line! We need you to make 4 easy phone calls, tweets, and posts to ensure ABLE gets scheduled for a vote! #passtheABLEact

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