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Sanja Kogelnik posted a discussion
1 hour ago
kerry mcnicholas is attending PPMD's event
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PPMD's Every Single [One] Tour: Chicago, IL at Chicago, IL

August 19, 2016 all day
Save the date! Registration for this FREE day-long meeting will open mid-July.------In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD is launching a multi-year community experience called the Every Single [One] Tour. Combining each of the pillars that make up PPMD’s mission – To End Duchenne – the Every Single [One] Tour will bring updates on research, advocacy, and care to half a dozen cities in 2016. These meetings will not replace …See More
2 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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Our most popular race weekend of the year - the Walt Disney World Marathon Weekend - is selling out fast! If you plan to join the Run For Our Sons team in January in Orlando, sign up soon before it's too late. We can't wait to for you to be part of the magic!

2017 WALT DISNEY WORLD® Marathon Weekend Presented by Cigna® - Parent Project Muscular Dystrophy

parentprojectmd.org

Join…

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Facebook4 hours ago · Reply
Parker Beatty is now a member of PPMD Community
7 hours ago
Jason Darienzo posted a discussion
21 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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Live chat today on DuchenneConnect from 2-5 pm ET! This is a chance for you to chat with a certified genetic counselor. Log into your DuchenneConnect account this afternoon in order to access the live chat feature: www.DuchenneConnect.org

DuchenneConnect

duchenneconnect.org

The leading registry for people with Duchenne Muscular Dystrophy provides an important resource to individuals with DMD and Becker and their families.…

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Facebookyesterday · Reply
Profile IconParent Project Muscular Dystrophy via Facebook
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This year PPMD will host the inaugural End Duchenne .1K at our 2016 Connect Conference in Orlando, FL! Join us for this fun and zany race as parents, families, kids of all ages, scientists and researchers, industry sponsors, and ANYONE and EVERYONE take to the streets of Orlando and together tackle .1K (about the length of a football field!). Your registration includes a race shirt, bib, swag bag and all the fun of racing. You won’t want to miss this fun and exciting event. A great way…

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FacebookWednesday · Reply
Brian Denger commented on Annie Kennedy's blog post Update from April 2016 Muscular Dystrophy Coordinating Committee (MDCC) Meeting
"The MDCC focuses on activities concerning the 9 known muscular dystrophies, not just DMD.   Members from federal agencies that provide funding or services for people affected by muscular dystrophy and volunteer advocacy organization make…"
Wednesday
Govind replied to Steven's discussion SUMMIT'S IND CLEARED BY FDA ALLOWING EXPANSION OF PhaseOut DMD, A PHASE 2 CLINICAL TRIAL OF EZUTROMID (SMT C1100), INTO THE US
"Thanks..."
Wednesday
Nida Zuberi replied to Vanita's discussion Hi everyone
"Vanity could you tell me what herbal medicine you are giving to your child. My son is also 5."
Tuesday
Profile IconMarlene Herrema and Katherine VanderWeele joined PPMD Community
Tuesday
Debra Canter shared Annie Kennedy's blog post on Facebook
Tuesday
Katherine VanderWeele favorited PPMD's event PPMD's Every Single [One] Tour: Chicago, IL
Tuesday
Profile IconParent Project Muscular Dystrophy via Facebook
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It's been a rough few weeks for this community, but our efforts to shape and reshape access barrier issues continue. Last Wednesday at the Muscular Dystrophy Coordinating Committee (MDCC) meeting, we took a giant leap forward. It was a pivotal day that PPMD was proud to be a part of!

Update from April 2016 Muscular Dystrophy Coordinating…

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FacebookTuesday · Reply
Steven replied to Steven's discussion SUMMIT'S IND CLEARED BY FDA ALLOWING EXPANSION OF PhaseOut DMD, A PHASE 2 CLINICAL TRIAL OF EZUTROMID (SMT C1100), INTO THE US
"Hi, not as yet in the US. Likely to be in the Fall. I'd suggest getting in touch with the company directly so they can inform you once they know which sites in the US will be involved.  Regards  Steven"
Tuesday
Govind replied to Steven's discussion SUMMIT'S IND CLEARED BY FDA ALLOWING EXPANSION OF PhaseOut DMD, A PHASE 2 CLINICAL TRIAL OF EZUTROMID (SMT C1100), INTO THE US
"Steven - How can we more info regarding enrollment ? any sites announced ? Thanks."
Tuesday
 
 
 

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