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Annie Kennedy
  • Female
  • Bethesda, MD
  • United States
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Annie Kennedy, Senior Vice President, Legislation & Public Policy

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City:
Bethesda
State:
Maryland

Annie Kennedy's Blog

FDA Makes Determination Regarding In-Dwelling Ports

Posted on May 26, 2017 at 2:45pm 0 Comments

Time and again in our Duchenne community, we see brave kids and their warrior parents work to change the landscape. After all, it’s that exact spirit upon which PPMD was founded. And with that same spirit that family after family has transformed their personal moments into broader movements that have benefited us all.

 

On May 18, the FDA Pediatric Advisory Committee convened to determine whether to allow for the protocol of Sarepta’s ESSENCE trial to…

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FDA Pediatric Advisory Committee Unanimously Votes YES — Now Moves to Commissioner

Posted on May 18, 2017 at 4:30pm 0 Comments

Today’s Pediatric Advisory Committee Meeting resulted in a unanimous decision from committee members to recommend the use of in-dwelling ports in Sarepta's ESSENCE…

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Today’s FDA Pediatric Advisory Committee Meeting

Posted on May 18, 2017 at 10:00am 0 Comments

As our clinical trial pipeline unfolds and therapies become available, navigating the landscape is becoming increasingly complex. But today our landscape shone a bit brighter as the sun rose on the FDA campus early this morning and we watched members of our Duchenne community…

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PPMD Publishes & Testifies on Newborn Screening

Posted on May 16, 2017 at 4:40pm 0 Comments

PPMD's SVP of Legislation & Public Policy, Annie Kennedy and Michelle Puryear, MD, PhD, testified at the Advisory Committee on Heritable Disorders in Newborns and Children last week.



On the heels of a recent publication in the International Journal of Neonatal Screening, Dr. Puryear provided an update of the therapeutic pipeline and some of PPMD's activities around developing infrastructure to support a pilot for newborn screening for…

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Latest Activity


Staff
Annie Kennedy posted a blog post

FDA Makes Determination Regarding In-Dwelling Ports

Time and again in our Duchenne community, we see brave kids and their warrior parents work to change the landscape. After all, it’s that exact spirit upon which PPMD was founded. And with that same spirit that family after family has transformed their personal moments into broader movements that have benefited us all. On May 18, the FDA Pediatric Advisory Committee convened to determine whether to allow for the protocol of Sarepta’s ESSENCE trial to be revised to allow for the placement of…See More
Friday

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Annie Kennedy posted blog posts
May 18

Staff
Annie Kennedy posted blog posts
May 16

Staff
Annie Kennedy posted a blog post

PPMD Response to the House Passage of the American Health Care Act

We may have lost the battle — but the war is far from over.Some days are hard to make sense of. Today feels like one of those for many as we watched the House votes tally this afternoon.This community knows better than most that our healthcare system needs repair and innovation. But the proposals that have been brought forward have not represented enhancements to healthcare access, quite the contrary. So this afternoon the House voted on – and passed – a version of the American Health Care Act…See More
May 4

Staff
Annie Kennedy posted a blog post

ACTION ALERT: ­Immediate Action Needed – Revised AHCA Bill Threatens Duchenne Community’s Access to Health Care Coverage

The current version of American Health Care Act (AHCA) directly threatens essential health benefits (EHBs), Medicaid eligibility and funding, and vital health care protections for our Duchenne community.  I wish there was a way to sugar coat this. Find the silver lining. See the glass as half full. But there isn’t.  If you are a…See More
Apr 28

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Annie Kennedy posted blog posts
Apr 14

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Annie Kennedy's 2 blog posts were featured
Apr 5

Staff
Annie Kennedy posted a blog post

PPMD's Duchenne Drug Development Roundtable Meeting Series, Part 3: Clinical Trial Readiness from the Viewpoint of Clinicians and Infrastructure

Accelerating trials. Protecting our robust therapeutic pipeline. Ensure as many hits on goal as we can. Priorities shared by all of us.And to achieve this, PPMD has convened our industry partners through our Duchenne Drug Development Roundtable and held a series of small, targeted meetings this winter, each focused on…See More
Apr 5

Staff
Annie Kennedy posted a blog post

At Long Last, PDUFA VI Hearings Have Begun – But There’s a Twist

Wow...what a week in Washington! President Trump released his budget proposal, the American Health Care Act moves to the floor of the House for a vote today, the U.S. Supreme Court ruled on a landmark case around the rights of students with disabilities within the public school system, and at long last – after months of our Duchenne community’s engagement, testimony, Hill visits, and…See More
Mar 23

Staff
Annie Kennedy's blog post was featured

ACTION ALERT: Make Your Voice Heard on New Healthcare Proposal

“Who’s on first?”Remember that classic Abbott & Costello routine? Well, trying to track the quickly-shifting healthcare bill has felt much like watching that routine. Complex, confusing, and exhausting. But the stakes here are no laughing matter. We recognize that each member of our community views these issues through a unique…See More
Mar 21

Staff
Annie Kennedy posted a blog post

ACTION ALERT: Make Your Voice Heard on New Healthcare Proposal

“Who’s on first?”Remember that classic Abbott & Costello routine? Well, trying to track the quickly-shifting healthcare bill has felt much like watching that routine. Complex, confusing, and exhausting. But the stakes here are no laughing matter. We recognize that each member of our community views these issues through a unique…See More
Mar 21

Staff
Annie Kennedy posted a blog post

Meet the 2017 PPMD Adult Advisory Committee (PAAC)

Years ago, a friend of mine named Tom Bailey who had Duchenne wrote a memoir that he entitled, Moving Mountains Without Muscles. As I look at the tremendous accomplishments of PPMD’s Adult Advisory Committee since we first launched this leadership group 2 years ago, I am astounded by how much passion, expertise, and effort each…See More
Jan 16

Staff
Annie Kennedy posted a blog post

New Resource to Help Navigate EXONDYS 51 Access

Prior to the approval of EXONDYS 51™, we knew that access to emerging therapies would be a process – and an often challenging process at that. Based on the previous experiences of other rare disease…See More
Jan 13

Staff
Annie Kennedy posted a blog post

BREAKING NEWS: 21st Century Cures Crossed Over the Finish Line!

The Duchenne Community’s Voice Was Essential Every Step of the Way & Contains PPMD’s Provision to Strengthen Patient Focused Drug Development Efforts To everyone in our PPMD community who called, reached out, emailed, and met with your elected officials – WE DID IT! Today, we are thrilled that Congress has passed the…See More
Dec 7, 2016

Staff
Annie Kennedy posted a blog post

Understanding Insurance Determinations

With the accelerated approval of EXONDYS 51™ (aka eteplirsen) by the FDA in September, the Duchenne community has been quickly introduced to a whole new vocabulary and a whole…See More
Nov 2, 2016

Staff
Annie Kennedy posted a blog post

The Assistance Fund Launches Duchenne Program to Support Access to Exondys 51

Patient Assistance programs are typically non-profit organizations sponsored by drug companies, patient advocacy organizations, and civic groups that establish disease specific programs to facilitate access to brand-name medications. In the case of The Assistance Fund…See More
Oct 28, 2016

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At 5:30pm on September 13, 2014, Nicole Fry said…

Hi Annie! How blessed PPMD is to have you on their (our!) team! I met you several years ago when you were the MDA camp director at Camp Maria. My son's name is Tyler. He goes to CNMC & has DMD. You will see my name come up as Nicole, but I go by "Nicki" and you may remember me by that name.

 
 
 

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