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Annie Kennedy
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  • 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

ACTION ALERT: Tell Your Senator to Vote NO on Today's Healthcare Repeal!

Posted on July 25, 2017 at 9:05am 0 Comments

Today, the Senate is expected to start floor debate and motion for a vote on either the Better Care Reconciliation Act (BCRA), which would repeal and immediately replace the Affordable Care Act (ACA), or the Obamacare Repeal Reconciliation Act (ORRA), which would repeal portions of the ACA after a two-year delay. The Senate is working to pass whichever bill is more likely to attain 50 votes. 

 

The Congressional Budget Office released reports last week that…

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FY 18 Labor HHS Report Language Released: Our Duchenne Community is Stronger Than Ever!

Posted on July 19, 2017 at 12:00pm 0 Comments

Transitions are hard. That’s the truth whether you’re talking about a new school year, a new job, or even a new Congress. And, in particular, new Presidential Administrations are always complex political climates in Washington.

 

But this year, our Duchenne community came together once again and embraced the challenge of this latest transition. With so many new Members of Congress and Federal Agency leadership in flux, we knew that our 2017 February…

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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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Latest Activity

Michelle Meunier favorited Annie Kennedy's blog post ACTION ALERT: Tell Your Senator to Vote NO on Today's Healthcare Repeal!
5 hours ago

Staff
Annie Kennedy posted a blog post

ACTION ALERT: Tell Your Senator to Vote NO on Today's Healthcare Repeal!

Today, the Senate is expected to start floor debate and motion for a vote on either the Better Care Reconciliation Act (BCRA), which would repeal and immediately replace the Affordable Care Act (ACA), or the Obamacare Repeal Reconciliation Act (ORRA), which would repeal portions of the ACA after a two-year delay. The Senate is working to pass whichever bill is more likely to attain 50 votes.  The Congressional Budget Office released reports last week that said …See More
7 hours ago

Staff
Annie Kennedy posted a blog post

FY 18 Labor HHS Report Language Released: Our Duchenne Community is Stronger Than Ever!

Transitions are hard. That’s the truth whether you’re talking about a new school year, a new job, or even a new Congress. And, in particular, new Presidential Administrations are always complex political climates in Washington. But this year, our Duchenne community came together once again and embraced the challenge of this latest transition. With so many new Members of Congress and Federal Agency leadership in flux, we knew that our 2017 February Advocacy Conference and local outreach was more…See More
Jul 19

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
May 26

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Annie Kennedy posted blog posts
May 18

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Annie Kennedy posted blog posts
May 16

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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

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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

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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

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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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