"Hi, I clicked on the link and it’s saying the survey has ended. If it hasn’t I’d love you participate in this study. my mother is a positive carrier and my brother had Duchenne’s. I have never been tested but I’m…"
Photos
Videos
Featured Blog
In Support of Approvals
Posted by Pat Furlong on March 7, 2014 at 9:30am 0 Comments 1 Favorite
As a mother who lost two sons to this dreadful disease, I am driven to find every way possible to help bring new therapies to families, to end Duchenne. PPMD supports and agrees with all parents urging the agency to accept Sarepta’s submission for the approval of eteplirsen, as well as any other therapy that shows similar promise. The voices of patients and caregivers are critical to the process of drug development and we believe the message is being heard.
PPMD is…
ContinueWelcome to the PPMD Community.
Getting started is easy. Just click one of the icons below.
|
|
|
|
|
|
Discussions
Carrier testing and status research
Started by Brenna Mellicker in General Discussion. Last reply by Nicole Ammons 1 hour ago. 1 Reply 0 Favorites
Tadalafil phase 3 trial Eli Lilly & Co.
Started by Phil in Research. Last reply by Mindy yesterday. 17 Replies 0 Favorites
Sarepta Phase III???
Started by Wendy Kelly in Research. Last reply by Tommy Paine on Wednesday. 3 Replies 0 Favorites
PLEASE SIGNT FDA SAY YES PETITION AND ENCOURAGE OTHERS TO DO IT
Started by micro kid in Advocacy. Last reply by Tommy Paine on Wednesday. 3 Replies 1 Favorite
Duchenne and Epilepsy
Started by mehrzad haidari in Research on Wednesday. 0 Replies 0 Favorites
Latest Activity
Nicole Ammons posted a status"Hi, I’m new to this site. my mother is a positive carrier of Duchenne’s & my brother had Duchenne’s. I’m trying to see where I can get free "
Tammy Cate commented on PPMD's event 2014 Annual Connect Conference"I too am just checking on updates. I would love to get this planned and can't wait to attend my first PPMD conference. "
Tammy Cate is attending PPMD's event
2014 Annual Connect Conference at Chicago
June 26, 2014 to June 29, 2014
Save the Date!2014 Connect Conference in ChicagoDate: June 26-29, 2014Location: Chicago Marriott Downtown Magnificent MileSee More
StaffPat Furlong's blog post was featured
In Support of Approvals
As a mother who lost two sons to this dreadful disease, I am driven to find every way possible to help bring new therapies to families, to end Duchenne. PPMD supports and agrees with all parents urging the agency to accept Sarepta’s submission for the approval of eteplirsen, as well as any other therapy that shows similar promise. The voices of patients and caregivers are critical to the process of drug development and we believe the message is being heard.PPMD is doing everything it can to…See More
Parent Project Muscular Dystrophy via Facebook
PPMD is doing everything it can to enable the FDA to speed the approval of new therapies to all who so desperately need them. We continue to demand that the FDA use all available tools given to them by Congress to approve rapidly treatments that show safety and effectiveness. Here are 3 simple actions you can take to help.
community.parentprojectmd.org
As a…
See More
StaffPat Furlong posted a blog post
In Support of Approvals
As a mother who lost two sons to this dreadful disease, I am driven to find every way possible to help bring new therapies to families, to end Duchenne. PPMD supports and agrees with all parents urging the agency to accept Sarepta’s submission for the approval of eteplirsen, as well as any other therapy that shows similar promise. The voices of patients and caregivers are critical to the process of drug development and we believe the message is being heard.PPMD is doing everything it can to…See More
Trinh Nguyen favorited Kathi Kinnett's blog post Contemporary Cardiac Issues in Duchenne Muscular DystrophyParent Project Muscular Dystrophy via Facebook
UPDATE: 88 #MDCAREAct cosponsors in the House, 21 in the Senate! Let's get to 100 & 25 — We can do it! Tell your members of Congress to take action to #EndDuchenne: www.ParentProjectMD.org/TakeAction And help us thank our newest cosponsors: Congressman Stephen Fincher [TN-8], Congressman Frank Wolf [VA-10], & Congressman Steve Daines [MT-At Large]
Mindy replied to Phil's discussion Tadalafil phase 3 trial Eli Lilly & Co."Cialis targets PDE5 inhibition in a more targeted way (Viagra also inhibits PDE1c, and Cialis doesn't), and so the hope is that the cardiac issues seen in the Viagra trial won't apply. "
Parent Project Muscular Dystrophy via Facebook
A great article from The Huffington Post on Team Joseph's fight to #endDuchenne. Thank you Northwestern University Dance Marathon for providing the Duchenne community with such an amazing opportunity, and good luck to all 1,500 dancers tomorrow!
A Race Against the Clock: Parents, Researchers Lobby for Accelerated Duchenne Muscular Dystrophy...
On…
See MoreNeed help using this community site? Visit Ning's Help Page.
 |
 |
 |
© 2014 Created by PPMD.
Badges | Report an Issue | Privacy Policy | Terms of Service
