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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

Meet the 2017 PPMD Adult Advisory Committee (PAAC)

Posted on January 16, 2017 at 7:30pm 0 Comments

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…

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New Resource to Help Navigate EXONDYS 51 Access

Posted on January 13, 2017 at 11:00am 0 Comments

Prior to the approval of EXONDYS 51™, we knew that access to emerging therapies would be a process – and an often challenging process at…

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

Posted on December 7, 2016 at 2:30pm 0 Comments

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…

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Understanding Insurance Determinations

Posted on November 2, 2016 at 12:30pm 0 Comments



With the accelerated approval of EXONDYS 51™ (aka eteplirsen) by the FDA in September, the Duchenne community has been quickly…

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Latest Activity


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

Staff
Annie Kennedy posted a blog post

ABLE Accounts: Improvements Moving Through Congress & Determining Which State’s Program is Best for You?

With the initiation of 4 states ABLE programs already begun and Oregon having just anounced that their program will launch in December, any qualified individual (meaning most families with Duchenne) can open their accounts in 2016, if interested. We have previously shared information about the ABLE program and the…See More
Oct 13, 2016

Staff
Annie Kennedy posted blog posts
Oct 12, 2016

Staff
Annie Kennedy posted blog posts
Sep 14, 2016

Staff
Annie Kennedy posted a blog post

The Importance of Early Diagnosis: Eliminating the Diagnostic Odyssey

The global Duchenne community will come together on September 7 for World Duchenne Awareness Day. This year a theme was chosen that is not only critical to changing the diagnostic odyssey for people with Duchenne…it is a theme that…See More
Sep 1, 2016

Staff
Annie Kennedy posted a blog post

Essential Back-To-School Resources for Duchenne

I have a confession… I have had the privilege of serving as an advocate for families whose children have Duchenne within school systems for more than 20 years, have attended hundreds of IEPs and 504 Plan meetings, and have given even more school presentations, assemblies and in-services about Duchenne… but this year is…See More
Aug 29, 2016

Staff
Annie Kennedy posted a blog post

PDUFA VI & Its Impact on Duchenne

On Friday, PPMD submitted additional comments to the latest version of PDUFA VI.  At this point, there are few members of our Duchenne community who haven’t heard the acronyms ‘PDUFA’ or ‘FDASIA’.…See More
Aug 19, 2016

Staff
Annie Kennedy posted a blog post

Understanding ABLE Programs & How You Can Benefit

We know that many within our community have long been advocating for and following the passage of The Achieving a Better Life Experience (ABLE) Act and subsequent IRS rules and state implementation. In June, the first state ABLE programs launched with the initiation of Ohio’s STABLE program. At …See More
Aug 12, 2016

Staff
Annie Kennedy posted a blog post

PPMD Responds to Threat to Lose DOD Funding

Our Duchenne community’s life-saving research efforts are funded through a number of public and private sources. Beginning in FY 2011, the federal funding to Duchenne began to include the Congressionally Directed Medical Research Program (CDMRP) through the Department of Defense. Between FY 2011 and FY 2016, funding to Duchenne…See More
Jun 16, 2016

Staff
Annie Kennedy posted a blog post

National 21st Century Cures Act/ Senate Cures Day of Advocacy - TODAY!

As you know, PPMD has been helping to lead national advocacy efforts around the 21st Century Cures/ Senate Innovation legislation for more than two years and we now have a very short window of opportunity in which the Senate can act to finalize this legislation and then both chambers can ‘conference’ these bills, come to…See More
Jun 7, 2016

Staff
Annie Kennedy favorited Buddy Cassidy's blog post Buddy's Elegy for Ben Cumbo
May 26, 2016
Brian Denger commented on Annie Kennedy's blog post Update from April 2016 Muscular Dystrophy Coordinating Committee (MDCC) Meeting
"The MDCC focuses on activities concerning the 9 known muscular dystrophies, not just DMD.   Members from federal agencies that provide funding or services for people affected by muscular dystrophy and volunteer advocacy organization make…"
May 3, 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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