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Thank you to our 2016 Connect Conference Resource Fair Providers!

Posted by PPMD on July 14, 2016 at 1:36pm 0 Comments

The 2016 Connect Conference again provided a forum for families to interact with a variety of resource providers. We thank our resource fair sponsors for working with us to make every single resource known to our community!…

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Profile IconParent Project Muscular Dystrophy via Facebook
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We are excited to share with you presentations from PPMD’s 22nd Annual Connect Conference! If you were unable to attend this year’s Connect Conference, this is your opportunity to review some of the incredibly informative panels and discussions from this year’s meeting. We will continue to update this page over the coming weeks with slides and video content!

2016…

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Louisiana and Mississippi Families

A group for families in Louisiana and Mississippi. If we need to divide up we can!!See More
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Brandy Sonnier posted a discussion

Trying to reach out to parents in Louisiana:)

Hi, Im looking for parents to touch base with in Louisiana. My son is 9 years old and was diagnosed at 3. We were pretty much given the diagnosis and left to fend for ourselves. Duchenne hadn't really hit our home til this past September when my son fell and broke his femur at school and is still not walking on his own. He has made leaps and bounds in therapy but the fear he has of falling again is GREAT! We got into an amazing pediatrician that has opened door after door for us but there is…See More
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Shelly favorited Pat Furlong's blog post PTC Therapeutics Provides Regulatory Update on Translarna™
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[Upcoming Webinar] PTC Therapeutics Provides Regulatory Update on Translarna™ at Online Webinar - Eastern Time Zone

August 1, 2016 from 11am to 12pm
Monday, August 1st at 11am easternPPMD will host a webinar on Monday, August 1 at 11am eastern with PTC Therapeutics to discuss the latest news regarding Translarna. Craig McDonald will present the benefits of Translarna from emerging data and senior leadership from PTC will be on hand to answer questions regarding the path forward for the therapy with the FDA.Speakers:Pat Furlong: PPMD Founding President & CEOStuart W. Peltz, PhD: CEO, PTC TherapeuticsMark E. Boulding: EVP and Chief Legal…See More
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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We are so proud of Buddy Cassidy and our entire Adult Advisory Committee who continue to break down barriers and initiate efforts based on topics that matter most to their day to day life with Duchenne! Not only do they lead our community, they are leading the rare disease community. Thank you also to The Wall Street Journal that continues to give the Duchenne community a platform for our voices!…

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Profile IconParent Project Muscular Dystrophy via Facebook
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Today PTC announced that they have submitted an appeal to escalate continuing discussions about the Refuse to File letter issued earlier this year with respect to the company's New Drug Application (NDA) for Translarna. We strongly believe that PTC and the families in our community that have participated for years in this trial, deserve the opportunity to share the data they have collected and their experiences with this therapy. Join us on August 1 at 11am eastern as we host a webinar…

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Pat Furlong posted a blog post

PTC Therapeutics Provides Regulatory Update on Translarna™

PTC recently participated in discussions with FDA to discuss the Refuse to File (RTF) letter issued on February 22, 2016 with respect to the company's New Drug Application (NDA) for Translarna for the treatment of Duchenne. Today PTC announced that they have recently submitted…See More
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PPMD posted an event
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[Upcoming Webinar] PTC Therapeutics Provides Regulatory Update on Translarna™ at Online Webinar - Eastern Time Zone

August 1, 2016 from 11am to 12pm
Monday, August 1st at 11am easternPPMD will host a webinar on Monday, August 1 at 11am eastern with PTC Therapeutics to discuss the latest news regarding Translarna. Craig McDonald will present the benefits of Translarna from emerging data and senior leadership from PTC will be on hand to answer questions regarding the path forward for the therapy with the FDA.Speakers:Pat Furlong: PPMD Founding President & CEOStuart W. Peltz, PhD: CEO, PTC TherapeuticsMark E. Boulding: EVP and Chief Legal…See More
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Permobil F3 vs AmySystems

I am in the process of getting a new chair and wanted to know what peoples' experiences have been with the Permobil F3 or the AmySystems and if they would recommend the chair. Please let me what you think.See More
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Sharene Ruby L:ewis replied to Candice Wright's discussion Anxiety and Stress in Large Public Elementary School: How Much is Too Much? Have You Pulled Your Son From Mainstream School and Transferred Him to. Smaller, Alternative School? Advice appreciated.
"I pulled my son from school and placed him on home instruction by the dept of education. He goes out socially as he can handle it. Have you thought of a k9 companion?"
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