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

Profile Information

City:
Bethesda
State:
Maryland

Annie Kennedy's Blog

PPMD Signs Letter to Congressional Leaders re: National Defense Authorization Act (NDAA) Language

Posted on November 20, 2017 at 6:30pm 0 Comments

Earlier this month, PPMD and other advocacy organizations joined 180 U.S. Representatives and 54 U.S. Senators to request the removal of language included in the…
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Updates in Duchenne Newborn Screening Efforts

Posted on November 20, 2017 at 6:30pm 0 Comments

Earlier this month, I testified on behalf of PPMD and the national Duchenne community before the Advisory Committee on Heritable Disorders in Newborns and Children – the U.S. federal…

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

Posted on November 15, 2017 at 1:46pm 0 Comments

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…

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Anthem Revises Policy for EXONDYS 51, Deemed Medically Necessary for Ambulatory Patients

Posted on November 9, 2017 at 9:58am 0 Comments

Progress! Today, Anthem issued a revised policy regarding Sarepta’s EXONDYS 51. In the revision, Anthem declared EXONDYS 51 medically necessary for the treatment of Duchenne muscular dystrophy when all of the following criteria are met:

  1. Individual has a confirmed diagnosis of Duchenne muscular dystrophy; and
  2. Individual must be ambulatory (with or without needing an…
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Latest Activity


Staff
Annie Kennedy posted blog posts
yesterday

Staff
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

Staff
Annie Kennedy posted blog posts
Nov 9

Staff
Annie Kennedy posted a blog post

Action Alert: Proposed Senate Tax Plan & the Direct Impact on Our Community

Call & Email Your Senators Today!Yesterday, the Senate released the Tax Cuts and Jobs Act which includes many issues that we feel an obligation to alert you to. While PPMD does not typically engage in legislation related to tax reform, this proposal (being referred to as the ‘Republican Tax Plan’) contains elements that will have a direct impact on our community — your…See More
Nov 3

Staff
Annie Kennedy posted a blog post

Update on Formal Dispute Resolution Process For Ataluren

On October 25, PTC Therapeutics shared the news that the FDA had issued a Complete Response Letter regarding their application for ataluren, noting that FDA had stated that “an additional…See More
Nov 2

Staff
Annie Kennedy posted a blog post

Calling All Adults with Duchenne/Becker – Join the 2018 PPMD Adult Advisory Committee!

Ever wished you could change the world – or at least your piece of it? Been looking for a way to engage a bit more? Have personal experience that you’d like to see be better reflected in national policy and program efforts?PPMD is seeking adult members of our Duchenne/Becker community to serve on the PPMD Adult Advisory…See More
Oct 30
Alex Toalson favorited Annie Kennedy's profile
Oct 18

Staff
Annie Kennedy posted a blog post

2017 World Muscle Society: Highlighting Progress in Duchenne

“WMS - What’s the buzz?” It has been many years since I’ve had the opportunity to attend the World Muscle Society meeting and wow how things have changed! While PPMD has strong representation here every year, this year I have the pleasure of being here alongside Kathi Kinnett. Kathi and I will both be sharing highlights from…See More
Oct 4

Staff
Annie Kennedy posted a blog post

ACTION ALERT: Stop the Graham-Cassidy proposal in the Senate

The Senate is considering another effort to repeal the Affordable Care Act (ACA) before the end of the month. Last week, Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) released a new plan to repeal and replace the ACA. This proposal is commonly referred to as Graham-Cassidy, and it must be considered by the Senate by September 30…See More
Sep 19

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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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