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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

Profile Information

City:
Bethesda
State:
Maryland

Annie Kennedy's Blog

Action Alert! Americans with Disabilities Act (ADA) in Jeopardy

Posted on February 12, 2018 at 9:30am 0 Comments

The Americans with Disabilities Act (ADA) is in jeopardy and a current bill in the House of Representatives threatens to undermine the protections of the ADA.



We need all members of our Duchenne community to contact your…

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Action Alert! Americans with Disabilities Act (ADA) in Jeopardy

Posted on February 12, 2018 at 9:30am 0 Comments



UPDATE - FEBRUARY 20, 2018:
 Despite bold outcry from disability and civil rights groups, HR 620 has passed in the House. PPMD has been in touch with Senate leadership and the path in the Senate is uncertain, but we urge our community to…

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Meet the 2018 PPMD Adult Advisory Committee (PAAC)

Posted on January 17, 2018 at 10:30am 2 Comments

In January of 2014 we held our inaugural PAAC Leadership Workshop in Washington,DC. The day included engagement with federal policy makers, congressional staff, and research leaders. At the end of the day, a long-time colleague of mine from the FDA who had spent the entire day with us pulled me aside…

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2018 Off to a Strong Start — 'Patient Experience Data’ Section Added to FDA Reviews

Posted on January 9, 2018 at 3:30pm 0 Comments

Remember that hot June day in 2015 when hundreds of Duchenne community members rallied together at the U.S. Capitol for PPMD’s EndDuchenne rally? That same day, our longtime Congressional champions Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN) introduced the Patient Focused Impact…

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Latest Activity

Margarita Yashchenko commented on Annie Kennedy's blog post Meet the 2018 PPMD Adult Advisory Committee (PAAC)
"I admire of such people. I would like having the same organization in Ukraine. Maybe somebody tell me how I can do it. Help our children. Will write me. My email: my-science@ukr.net.  "
Mar 15

Staff
Annie Kennedy posted blog posts
Feb 12

Staff
Annie Kennedy posted a blog post

Meet the 2018 PPMD Adult Advisory Committee (PAAC)

In January of 2014 we held our inaugural PAAC Leadership Workshop in Washington,DC. The day included engagement with federal policy makers, congressional staff, and research leaders. At the end of the day, a long-time colleague of mine from the FDA who had spent the entire day with us pulled me aside and said, “Wow. These men…See More
Jan 17

Staff
Annie Kennedy posted a blog post

2018 Off to a Strong Start — 'Patient Experience Data’ Section Added to FDA Reviews

Remember that hot June day in 2015 when hundreds of Duchenne community members rallied together at the U.S. Capitol for PPMD’s EndDuchenne rally? That same day, our longtime Congressional champions Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN) introduced the Patient Focused Impact Assessment Act (PFIA, S. 1597) —…See More
Jan 9

Staff
Annie Kennedy posted a blog post

Take Action - We Can Still Impact the Tax Reform Bill

The Senate passed their tax reform bill. In the dead of night. Overnight -- shortly before 2 AM on Saturday.Despite protests and outcries from almost every sector: non-profits, disability communities, healthcare providers, educators, universities, researchers, graduate students (future researchers, geneticists, nurses, PTs, physicians)...Now, both the House and…See More
Dec 6, 2017

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Annie Kennedy posted blog posts
Nov 20, 2017

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, 2017

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Annie Kennedy posted blog posts
Nov 9, 2017

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, 2017

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, 2017

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, 2017
Alex Toalson favorited Annie Kennedy's profile
Oct 18, 2017

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, 2017

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, 2017

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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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