PPMD Community

Ren added a discussion to the group Becker Parents

Dearth of Becker clinical trials

Here is the message I tried recently to post at the Advisory Committee Group:I couldn't find a way to comment on the news on the website, which would be a useful feature for users as well as the staff who write the news.This message is about the September 18 recap regarding the Duchenne platform trial community meeting.I am in favor of all the options put forward, but I am more than surprised that you didn't address the Becker patients as well.Becker is really part of the Duchenne community,…See More

Wednesday

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Ren joined PPMD's group

Becker Parents

Wednesday

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Kana Muraki is now a member of PPMD Community

Oct 3

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Jacob Hill posted a discussion

FDA: Approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy

Hello everyone! If you have a moment, please consider signing my petition to approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy.https://www.change.org/p/food-and-drug-administration-approve-vyondys-53-golodirsen-for-the-treatment-of-duchenne-muscular-dystrophy-2 See More

Sep 20

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Gary Pears is now a member of PPMD Community

Sep 17

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Jacob Hill is now a member of PPMD Community

Sep 3

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Ren replied to Kirubha Balakumar's discussion IV port for exon 51

"Does Exondys 51 help DMD amenable patients?"

Aug 26

Ren is now a member of PPMD Community

Aug 26

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Meera Viswanathan is now a member of PPMD Community

Aug 7

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Varun Viswanathan is now a member of PPMD Community

Aug 6

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Keith Higgins is now a member of PPMD Community

Jul 29

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Colin Werth posted an event

PPMD Community Day at Lewis Ginter Botanical Garden

August 10, 2019 from 8am to 4pm

On Saturday, August 10, 2019, the Children 's Hospital of Richmond at VCU and the PPMD team will host a free day-long meeting at Lewis Ginter Botanical Gardens packed with important information families, professionals, and support networks need to know.Saturday August 10th, 2019 from 8am-4pmLocation: Lewis Ginter Botanical Gardens -1800 Lakeside Avenue Henrico, Virginia 23228Cost: FREE for Duchenne community - Families, professionals, and support networksRegistration Deadline: Monday, August…See More

Jul 29

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Tata Nech posted a blog post

Todlers Language and Speech Delays

The development of the speech of a young child (1-3 years) is a very important stage in mastering the native language. Speech crumbs not just booming, it is formed. Therefore, assistance to the child in the development of talking in this period is particularly relevant. Properly organized communication and classes not only spur the development of the child's language, but also help to compensate for possible irregularities, for example, a lag in speech development.How to determine the level of…See More

Jul 24

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Eliza Geddes Franson favorited Eliza Geddes Franson's profile

Jul 10

Tata Nech is now a member of PPMD Community

Jul 8

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Shawn replied to Tao Wang's discussion Wait four months to join clinic trial or start with prednisone now

"I'm sorry to hear this too. Keith and Jill, your reply was spot on. Everything you wrote was what we've experienced. Tao, the first couple years are the worst. But yes it does get better. Our 14 year old son loves life. He's had an…"

Jun 27


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Dearth of Becker clinical trials

Becker Parents

FDA: Approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy

PPMD Community Day at Lewis Ginter Botanical Garden

Todlers Language and Speech Delays

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FDA: Approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy

IV port for exon 51

Wait four months to join clinic trial or start with prednisone now

Osteoporosis

How did you talk to your son about DMD?

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