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

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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 Representative today by calling the main Capitol line at: 202-224-3121…


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

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

 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…


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 and said, “Wow. These men are brilliant. They have such…


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 Assessment Act (PFIA, S. 1597) — and our 200+ PPMD advocates…


Latest Activity

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

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 the meeting for our community over the next few days, but I…See More
Oct 4, 2017

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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