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A New Care Guide to Give to Your Provider – Imperatives for Duchenne Care

Posted by Kathi Kinnett on April 14, 2014 at 1:00pm 9 Comments

Unfortunately, the care of people living with Duchenne muscular dystrophy differs from country to country, from state to state, and even from center to center. Email and stories that we get daily confirm that, despite the availability of Care Standards there is still significant practice variability, including centers and locations where clinicians…

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Deadline is TODAY — If you have not yet submitted your story for the FDA, please do so today! A collection of your testimonies will be sent to the FDA along with the new guidance we are working on.

Share Your Story with the FDA

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PPMD is working with the FDA to share our community perspectives about risk, benefit, and drug…

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Prakash replied to Prakash's discussion Tivorsan - Biglycan
"Thanks Chris."
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Chris Diemler replied to Prakash's discussion Tivorsan - Biglycan
"I emailed Dr. Justin Fallon earlier this year about trials with TVN-102, he said they would not start until 2015. He gave no time frame in 2015, just that they are at least a year away."
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Prakash replied to Prakash's discussion Tivorsan - Biglycan
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Prakash posted a discussion

Tivorsan - Biglycan

Hello,Does anyone know of a recent update with respect to Biglycan and how far along it is to get into trials?It is my understanding that Utrophin (as being developed by Summit) by itself cannot help with nNOS localization. This could mean that there may not be adequate blood flow for healthy muscle activity even with Utrophin substituting for Dystrophin. Biglycan is supposed to recruit both Utrophin and nNOS (in addition to other proteins in the sarcolemma). However, the last article I can see…See More
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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#tbt 20 years ago this summer, a group of 40 parents & 15 researchers gathered in Florida to build a community that, united, could fight #Duchenne. We asked one single question of each speaker - what would you do if this was your son? We began to write our business plan on the back of a napkin and from there PPMD and the Annual Connect Conference were born. This year marks PPMD's 20th Annual Connect Conference. Our agenda will cover a wide range of critical topics important to you…

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Staff
Kathi Kinnett commented on Kathi Kinnett's blog post A New Care Guide to Give to Your Provider – Imperatives for Duchenne Care
"Dr. Anne Connolly (Washington University, St. Louis) is conducting a study of boys younger than 2 1/2 yo and prednisone.  This study will evaluate the risks and benefits of early weekend prednisone treatment in very young patients living with…"
Wednesday
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"Eight-year-old Max Vertin has a disease that is weakening his muscles, but not his imagination." #EndDuchenne

8-year-old Boy Gets His Wish: Fly Like Iron Man

Eight year-old Max Vertin has a disease that weakens his muscles, but not his imagination. Make-A-Wish Colorado says Max, who loves to pretend to fly like a ...

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Profile IconParent Project Muscular Dystrophy via Facebook
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Are your members of Congress on board to reauthorize the #MDCAREAct and help us #endDuchenne? Because of YOUR efforts, we currently have 94 House members & 25 Senators cosponsoring the bill. Here's the full list: http://bit.ly/1mcPyjd. Let's keep adding names!

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Kathi Kinnett replied to J's mom's discussion Help with Behavioral Issues
"Maxine - I am sorry that your son is having so many problems. I am happy to talk with you off line about all the details of this? Feel free to email me Kathi@parentprojectmd.org if you think that might be helpful."
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Nadja replied to Jason Darienzo's discussion Regenerating muscle in Duchenne muscular dystrophy: age matters
"It is in Phase 2a in italy.results in August 2014, if they are positive than phase 2"
Wednesday
David Chu replied to Jason Darienzo's discussion Regenerating muscle in Duchenne muscular dystrophy: age matters
"hi Jason,This article is very good, do you know when the treatment technology can act on the human body?"
Wednesday
Peter commented on Kathi Kinnett's blog post A New Care Guide to Give to Your Provider – Imperatives for Duchenne Care
"May you please, shed more light on the Anne Connolley's study."
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Kareem Azzazi replied to PPMD's discussion Summer Traveling Tips
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