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Latest Activity

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
Ren joined PPMD's group
Kana Muraki is now a member of PPMD Community
Oct 3
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-2See More
Sep 20
Gary Pears is now a member of PPMD Community
Sep 17
Jacob Hill is now a member of PPMD Community
Sep 3
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
Meera Viswanathan is now a member of PPMD Community
Aug 7
Varun Viswanathan is now a member of PPMD Community
Aug 6
Keith Higgins is now a member of PPMD Community
Jul 29
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
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
Eliza Geddes Franson favorited Eliza Geddes Franson's profile
Jul 10
Tata Nech is now a member of PPMD Community
Jul 8
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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