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MD-CARE Act Passed!

Posted by Pat Furlong on September 18, 2014 at 10:13pm 2 Comments

Duchenne Community Knows No Bounds

Today – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing could stop us from ensuring that the life-saving research momentum of our landmark bill would be expanded to reflect the current needs of our…

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john replogle commented on Pat Furlong's blog post MD-CARE Act Passed!
"This is amazing!!..im in tears with joy to see this!..gives me hope for my son George Replogle and millions of children suffering from this illness!.."
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Rachel Sedacca-Replogle favorited PPMD's event September 24 Webinar: Early Pulmonary Care
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Rachel Sedacca-Replogle favorited Jason Darienzo's discussion New microscopy technique yields fresh data on muscular dystrophy
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Rachel Sedacca-Replogle commented on Pat Furlong's blog post MD-CARE Act Passed!
"This is excellent news! A big hug and a heartfelt thanks to everyone whose efforts made this happen! This is progress towards a cure and quality of lige for our boys. Let's put thus in the past with Polio where it belongs!"
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Rachel Sedacca-Replogle favorited Pat Furlong's blog post MD-CARE Act Passed!
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Profile IconHina Kausar and Jessica Tucker are attending PPMD's event
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September 24 Webinar: Early Pulmonary Care at Eastern Time Zone

September 24, 2014 from 2pm to 3pm
This is the first webinar in the 3-Part Pulmonary Care Webinar Series we are presenting this fall. September 24, 2:00-3:00 EDT: Early Pulmonary CareSpeakers:Dr. Hemant Sawnani (Cincinnati Children's Hosptial Medical Center)Dr. Richard Shell (Nationwide Children’s Hospital)Dr. Oscar Henry (“Hank”) Mayer (Children’s Hospital of Philadelphia)Topics:staying…See More
3 hours ago
Parul Makwana replied to Parul Makwana's discussion Recently diagnosed with deletion of Exon 49-50 in the group Early Years (diagnois-age 6)
"Hi , My son is 4 yr old now. We came to know about DMD this April when they had his blood test for Ck level which was very high. Right now he is doing well like normal kids. He can't jump and very cautious while running. He had low Vit D…"
5 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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Yesterday our Duchenne community once again made history by demonstrating that nothing can stop us – the #MDCAREAct Amendments of 2014 passed! WE DID IT!! Read what Pat has to say about this historic moment: http://j.mp/1tsf60D. And take a moment to share with us pictures and thoughts from your experiences advocating for the MD-CARE Act (either in D.C. or from home)!…

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Staff
Pat Furlong's blog post was featured

MD-CARE Act Passed!

Duchenne Community Knows No BoundsToday – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing could stop us from ensuring that the life-saving research momentum of our landmark bill would be expanded to reflect the current needs of our community. And, today the Paul D. Wellstone MD-CARE Act Amendments of 2014 (HR 594/ S 315)…See More
14 hours ago
Profile IconAngela Hart, Gretchen Agans, Jessica Tucker and 2 more joined PPMD Community
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wainaina muiruri replied to Jason Darienzo's discussion Muscular dystrophy: Repair the muscles, not the genetic defect
"A very interesting approach."
19 hours ago
himanshu Sharma replied to Parul Makwana's discussion Recently diagnosed with deletion of Exon 49-50 in the group Early Years (diagnois-age 6)
"Hi, I have been india last month and went to BABA Ramdev and some other aayurvedic , Ramdev medicine is not promising for such diseases, they are giving what they give for other normal healthy person. I also went to some other aayurvedic…"
19 hours ago

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