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

Posted by Kathi Kinnett on August 12, 2014 at 9:30am 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.…

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Discussions

exons 3 - 7

Started by James in General Discussion. Last reply by Keith Van Houten 22 hours ago. 17 Replies

UnitedHealthCare Tricare

Started by Dawn Jones in Research. Last reply by Keith Van Houten on Thursday. 1 Reply

still waiting on official diagnosis

Started by Dawn Jones in General Discussion. Last reply by Keith Van Houten on Thursday. 10 Replies

PTC's Translarna

Started by wainaina muiruri in Research. Last reply by wainaina muiruri on Wednesday. 6 Replies

Latest Activity

Profile IconParent Project Muscular Dystrophy via Facebook
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WORLD DUCHENNE AWARENESS DAY: On September 7th, 2014 the First World Duchenne Awareness Day will take place. We are proud to join with our sister organization United Parent Projects Muscular Dystrophy (UPPMD) and collaborators around the globe to raise awareness on this disease and build a better future for all children and young adults affected by Duchenne muscular dystrophy. Duchenne parents around the world joined together to create the movie "The many faces of Duchenne" to…

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Facebook5 minutes ago · Reply
Rahul Deshpande joined Bains's group
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India

For folks to share information about any research happening in India for Duchenne.
8 hours ago
Rahul Deshpande joined Lisa Jones's group
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Cincinnati Children's Hospital Medical Center

For families who take their children to Cincinnati Children's Hospital for DMD/BMD  medical care.See More
8 hours ago
Keith Van Houten replied to James's discussion exons 3 - 7
"What Cincinnati offers - and I'll quickly point out that they're not the only ones that do this - is a multidisciplinary care model.  You're seen by a team of doctors and professionals from different specialties, all of whom have…"
22 hours ago
Nabeel Ahmed commented on Jaffer Raza's photo
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Moj,Asj

"both looking great"
yesterday
Pat Hanscom is now a member of PPMD Community
yesterday
Ofir Arad replied to Nimi Langer's discussion How much to give? in the group Idebenone
"It's important to note that the safety was proved with boys between 10 and 18. High dose idebenone is toxic in vitro to brain cells http://www.ncbi.nlm.nih.gov/pubmed/21547417# so this dose may be dangerous to young kids. Remember that…"
Saturday
Ofir Arad joined Nimi Langer's group
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Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More
Saturday
Patricia OGorman joined PPMD's group
Friday
James replied to James's discussion exons 3 - 7
"Hi Eileen and all I just wondered what you feel Dr Wong and the Cincinnati hospital offer that is so good.  Is it just time, attention, advice etc?  It seems to me that so far there is really not much else - except steroids offcourse.…"
Thursday
Profile IconParent Project Muscular Dystrophy via Facebook
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You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.

Let’s improve DuchenneConnect’s informed consent. Give your opinion by September…

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FacebookThursday · Reply

Staff
Holly Peay posted a blog post

Let’s improve DuchenneConnect’s informed consent. Give your opinion by September 7th.

You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.As many of you know,…See More
Thursday
Keith Van Houten replied to Dawn Jones's discussion UnitedHealthCare Tricare
"I don't have tricare, but, I know I know a family that's been through this recently that is. Are you on Facebook?"
Thursday
Keith Van Houten replied to Dawn Jones's discussion still waiting on official diagnosis
"At a very high level, a stop codon is one of the types of gene mutations that cause duchenne. It's about 13% of cases. A drug called ataluren is in clinical trials and is targeted at for stop codons."
Thursday
Dawn Jones replied to Dawn Jones's discussion still waiting on official diagnosis
"It's official Spencer has DMD but it's not a deletion or skipping of the exxon, but an alteration resulting in the stop codon. This particular type isn't genetic right? Or is it? The dr didn't say anything about us getting…"
Thursday
Profile IconMark Veilleux, Barbara Del Rio and Patricia OGorman joined PPMD Community
Wednesday
 
 
 

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