PPMD Community


  • Add Photos
  • View All

Welcome to the PPMD Community.

Getting started is easy. Just click one of the icons below.

Read News

Join Groups

View Discussions

Build Resources

Attend Events


Exon 17 Duplication

Started by ruben lengler in Research 15 hours ago. 0 Replies


Started by Azucena Lopez de Nava in Research. Last reply by Antonio Castro yesterday. 3 Replies

Emflaza (aka deflazacort) Approvals

Started by Keith & Jill VE in General Discussion. Last reply by Keith & Jill VE on Saturday. 4 Replies

Exon Duplications

Started by Sai Chand. Gurujala in Research Sep 11. 0 Replies

Latest Activity

ruben lengler posted a discussion

Exon 17 Duplication

Hi my son has duplication (Exon 17) anybody with that specific Exon 17 duplication?See More
15 hours ago
Profile IconHirotami Ohara, ruben lengler, Carrie and 1 more joined PPMD Community
18 hours ago

PPMD posted blog posts

Annie Kennedy posted blog posts
Sep 13

Kathi Kinnett posted a blog post

PPMD’s #EverySingleOne Tour: Charleston, WV

We kicked off our fall Every Single One Tour stops in West Virginia this past weekend! We appreciate all of the families, speakers, and volunteers that spent the day with us in Charleston. Psychosocial Issues in Duchenne…See More
Sep 13
Akram Dergali is now a member of PPMD Community
Sep 13
Regina Reidenberg is now a member of PPMD Community
Sep 12

PPMD posted a blog post

Reminder: Deadline to Submit Written Comments for Ataluren Ad Comm is Thursday, September 14

The deadline to submit a written comment for the FDA Advisory Committee Meeting on ataluren is this upcoming Thursday, September 14th. To make a comment,…See More
Sep 12

Kathi Kinnett commented on Kathi Kinnett's blog post Important New Duchenne Steroid Protocol: Download the "PJ Nicholoff Steroid Protocol"
"Tia - a stress dose of steroids, if your son had been using daily steroids for more than 2 weeks, would absolutely have been advised.  However, this sounds like the sysmptoms of a fat embolism.when-parents-are-informed.  When patients have…"
Sep 11
Sai Chand. Gurujala posted a discussion

Exon Duplications

Hi All,Clinical research is going on Deletions. Anybody has any idea on Duplication's research.Serepta Pharma working on 40-53 Deletions.Does Gene Therapy is applicable for Duplication's as well. Please share .Thank youSee More
Sep 11
Louie Lewis posted a blog post

The Muscle Gain Truth No Fail System Review

The dynamics of weight loss are intriguing, in take a look at the many because they came from desire to shed some weight in comparison to the small number who do. You would think with all the diet plans and dietary supplements, that weight problems would go away. But that hasn't came about, so something must be wrong. The sheer number of programs and products out there helps it to be difficult to find out what is effective and what is not. And it is far from as if one solution is effective in…See More
Sep 11
Profile IconMason, marie noblett, Joe and 1 more joined PPMD Community
Sep 11
ven replied to Tayjus Surampudi's discussion Google Glass Blog from someone with DMD
"thanks a lot for sharing this."
Sep 11
ven posted a discussion

Mutation in Exon 12

Hi All,I just want to see if anyone else has Nonsense mutation in Exon 12. Just want to keep touch with all the people with this mutation to understand better how actually DMD progress in this mutation. My son is 4 years old now and taking Ataluren. I am seeing weakness in his legs increasing. We will starting deflazacort next month.ThanksVenSee More
Sep 11

PPMD posted a blog post

The 2018 End Duchenne Tour – Coming to a City Near You!

PPMD is excited to announce next year’s lineup of areas we will visit as part of our End Duchenne Tour!Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy, and care to cities across the country, featuring a roster of leading experts in the Duchenne space.You…See More
Sep 8
Jason Darienzo posted a discussion

Shortened telomeres linked to dysfunction in Duchenne muscular dystrophy, researchers find

Shortened telomeres linked to dysfunction in Duchenne muscular dystrophy, researchers findNew method reveals abnormally shortened telomeres in young DMD patients' muscle stem cellsA discovery about muscular dystrophy disorders has been made that suggests new possibilities for treatment. Researchers found that stem cells in the muscles of muscular dystrophy patients may, at an early age, lose their ability to regenerate new muscle, due to shortened telomeres.…See More
Sep 7

© 2017   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service