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Getting Results: Success from your Advocacy efforts in February!

Posted by Ryan Fischer on June 10, 2016 at 12:00pm 0 Comments

Thanks to your advocacy, this week we learned that all of the Duchenne priorities we advocated for this year with Members of Congress are one step closer to being included in next year’s budget.

 

Whether you traveled to DC for face-to-face meetings with members, or advocated from…

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Profile IconParent Project Muscular Dystrophy via Facebook
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What a way to start the day -- Raising awareness and having fun doing it! Parents, families, kids of all ages, scientists and researchers, and industry sponsors joined us in the Atrium this morning for the inaugural End Duchenne .1K at the 2016 #PPMDconnect Conference! What is better than a race you don't need to train for? For those of you unable to join us, we've put together a friendly guide so that you can put on your own End Duchenne .1K right in your community and customize…

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Profile IconParent Project Muscular Dystrophy via Facebook
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Thank you to Bruce Shwedick from Reptile Discovery for joining us for Day 1 of our Kids Track! Today our Kids Track participants had the opportunity to learn about and interact with snapping turtles, iguanas, crocodiles, and even a giant albino Asian python! The fun contiunes Monday & Tuesday with age specific breakout groups and activites. #PPMDconnect

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Keith & Jill VE is attending PPMD's event
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Mitchell's Run thru Rockford at Rockford, MI

August 20, 2016 all day
18th Annual Mitchell’s Run Thru Rockford Saturday August 20, 2016 – 5K Run/Walk – 8:30 AM Race was organized to benefit Parent Project Muscular Dystrophy. Our son, Mitchell, was diagnosed with Duchenne MD and all proceeds will be donated to PPMD in the name of Mitchell. This is a fun family event, live radio feed from WLAV, bands/music on course with a picnic and silent auction. The course runs through scenic Rockford and along The White Pine Trail!!!!For more information visit…See More
19 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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We are about to officially kick off PPMD's 2016 Connect Conference with a Welcome Address from PPMD President Pat Furlong. Follow along at ParentProjectMD.org/livestream! #PPMDconnect

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Profile IconParent Project Muscular Dystrophy via Facebook
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PPMD Adult Advisory Committee (PAAC) member Ben Dupree is taking over our Instagram account during the 2016 #PPMDconnect conference! Follow us @ParentProjectMD for all of Ben's updates!

Instagram photo by Parent Project MD • Jun 26, 2016 at 12:23am UTC

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See this Instagram photo by @parentprojectmd • 23 likes

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Profile IconParent Project Muscular Dystrophy via Facebook
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Registration for the 2016 #PPMDConnect Conference & our inaugural End Duchenne .1K is now open! The PPMD team is so excited to see everyone in Orlando, and we hope this next week is an incredible experience for you and your family. For those of you unable to attend this year, learn how you can join us online as we stream sessions & live tweet at ParentProjectMD.org/livestream.…

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Profile IconParent Project Muscular Dystrophy via Facebook
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Sarepta has shared an update for the Duchenne community regarding recent changes to the Phase III confirmatory clinical study, ESSENCE (Study 4045-301).

Sarepta Update for the Duchenne Community Regarding ESSENCE Study

community.parentprojectmd.org

Sarepta has shared an update for the Duchenne community regarding recent…

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FacebookFriday · Reply

Staff
PPMD posted a blog post

Sarepta Update for the Duchenne Community Regarding ESSENCE Study

Sarepta has shared an update for the Duchenne community regarding recent changes to the Phase III confirmatory clinical study, ESSENCE (Study 4045-301), as posted on clinicaltrials.gov [identifier: NCT02500381]. Sarepta acknowledges concerns regarding a 96 week placebo trial and hopes this communication provides some clarity to the changes of the design.Sarepta…See More
Friday
Jason Darienzo favorited Jason Darienzo's discussion Pluristem reports data showing PLX-PAD cells effective in treating Duchenne muscular dystrophy
Thursday
Galia Ben Ishay favorited Jason Darienzo's discussion Pluristem reports data showing PLX-PAD cells effective in treating Duchenne muscular dystrophy
Thursday
Profile IconParent Project Muscular Dystrophy via Facebook
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Unable to attend this year's Annual Connect Conference in Orlando? Join us online! PPMD will be live streaming most general sessions and our DuchenneConnect team will be live tweeting updates from many of the research presentations using the hashtag #PPMDconnect.

Join the 2016 #PPMDConnect Conference Online!

community.parentprojectmd.org

PPMD will be live streaming sessions from our 2016 Annual Connect Conference,…

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Jason Darienzo posted a discussion
Thursday
Dora Rojas joined PPMD's group
Wednesday
Cathy Johnson commented on PPMD's group Adolescence (age 7-12)
"Does anyone have a health aid in school that you employ (vs. the school district)?  My rising 5th grader goes to a private school that is requiring him to have an aid in order to return to school next year.  I'm scrambling trying to…"
Wednesday
Profile IconParent Project Muscular Dystrophy via Facebook
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Heart issues don't just affect some people with Duchenne; they affect all people with Duchenne. What Dr. Guttridge and his team at Ohio State are doing is anticipating the challenges future therapies may face in treating these issues of the heart. To #endDuchenne we will have to outsmart the disease progression. Dr. Guttridge is doing just that, by understanding the role NF-kB plays in heart failure. PPMD is so grateful to the work being done at institutes like The Ohio State University…

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FacebookWednesday · Reply

Staff
PPMD posted a blog post

PPMD Awards The Ohio State University Grant to Support Cardiomyopathy Therapy for Duchenne

Parent Project Muscular Dystrophy (PPMD) announced today plans to award Dr. Denis Guttridge of The Ohio State University with a $48,000 grant for his work in cardiac issues in Duchenne. Duchenne affects muscles, and since the heart is a muscle too, cardiac problems…See More
Wednesday
 
 
 

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