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Latest Activity

Profile Iconcheryl wagner, Amita Jain, Mary Yep and 5 more joined PPMD Community

Kathi Kinnett posted a blog post

PPMD’s #EverySingleOne Tour: Albuquerque, NM

On November 4, PPMD had the pleasure of working with the parents and providers of New Mexico to present our final Every Single One Tour stop of 2017 (click here for a preview of our 2018 Tour…See More

Ryan Fischer posted a blog post

VIDEO: Fundamentals of Access to Duchenne Therapies

Navigating access to approved therapies can be both time consuming and daunting. The time between approval by FDA to the day of a patient’s first commercial dose can vary depending on which insurance you have, your age and disease progression, and…See More

Annie Kennedy posted blog posts
David favorited PPMD's blog post Capricor Reports Significant Improvements in Duchenne Patients Treated with CAP-1002 Investigational Cell Therapy
Nov 17
Profile IconSusan Caldwell, Angelica Estrada, Sarah T and 1 more joined PPMD Community
Nov 16

PPMD posted a blog post

Capricor Reports Significant Improvements in Duchenne Patients Treated with CAP-1002 Investigational Cell Therapy

PPMD is excited to learn that Capricor's investigational cell therapy, CAP-1002, is showing significant improvements in people with Duchenne. We look forward to learning more details about this therapy in a community webinar on Wednesday, November 29 at 1pm eastern. Details coming soon!Read the release from Capricor: …See More
Nov 15

Annie Kennedy posted a blog post

Action Alert: If Passed, Proposed Tax Plans from Both Houses Will Affect Duchenne Community

Call & Email Your Senators Today!Both the House & Senate have now released their Tax Reform proposals, each with variations of similar policy impacts and changes that we feel an obligation to alert you to. It is anticipated that both Chambers will move this legislation swiftly and work to complete their votes during the week after Thanksgiving. Time is of the…See More
Nov 15

PPMD posted a blog post

PPMD Submits Community Sign-On Letter to FDA Supporting Approval of Ataluren

PPMD has been continuing to engage with both PTC and the FDA on behalf of the patient community regarding the regulatory review of ataluren. Earlier this month, PPMD reached out to FDA…See More
Nov 13
Moein posted a blog post


Any updates on HT-100?See More
Nov 12
jiasusa5 replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"I have two sons with DMD.We have applied for Emflaza and denied from insurance .We will claim for the approval but the thing is I am up set is that it clearly stated in the denial letter to use alternative PREDNISONE( that has more side effects then…"
Nov 9

Annie Kennedy posted blog posts
Nov 9
Profile Iconrogger vizcarra and Raghu joined PPMD Community
Nov 9
Najat Azar posted a discussion

Letter of Medical Necessity

I am trying to get home health care( nursing and aide ) for my 18 year old son who can not do ANYTHING for himselfDoes anyone have a good letter of medical necessity to get a full time home care ?See More
Nov 8
Sai Chand. Gurujala replied to Dalibor Randjelovic's discussion Is it dr Kevin Flanigan`s research hope for our boys with duplication? in the group Duplications
"Dear Rhis, Please provide the update on duplication research. When do we can expect the treatment. Sir, Please save our sons. Thank you."
Nov 7
rajendra garad is now a member of PPMD Community
Nov 6

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