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Annie Kennedy's Blog (85)

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

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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Added by Annie Kennedy on February 12, 2018 at 9:54am — No Comments

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

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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Added by Annie Kennedy on February 12, 2018 at 9:30am — No Comments

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…

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Added by Annie Kennedy on January 17, 2018 at 10:30am — 1 Comment

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…

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Added by Annie Kennedy on January 9, 2018 at 3:30pm — No Comments

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,…

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Added by Annie Kennedy on December 5, 2017 at 9:00am — No Comments

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

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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Added by Annie Kennedy on November 20, 2017 at 6:30pm — No Comments

Updates in Duchenne Newborn Screening Efforts

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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Added by Annie Kennedy on November 20, 2017 at 6:30pm — No Comments

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…

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Added by Annie Kennedy on November 15, 2017 at 1:46pm — No Comments

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

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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Added by Annie Kennedy on November 9, 2017 at 9:58am — No Comments

"My Journey on the 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?



Hear first-hand what…

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Added by Annie Kennedy on November 8, 2017 at 2:30pm — No Comments

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…

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Added by Annie Kennedy on November 3, 2017 at 10:00am — No Comments

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…

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Added by Annie Kennedy on November 2, 2017 at 9:30am — No Comments

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…

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Added by Annie Kennedy on October 30, 2017 at 11:37am — No Comments

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…

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Added by Annie Kennedy on October 4, 2017 at 1:00pm — No Comments

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…

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Added by Annie Kennedy on September 19, 2017 at 10:00am — No Comments

PPMD Lends Leadership to NCATS Rare Disease Research Toolkit Development

There are some days when I feel like our community is in its infancy. When I look at where we are in terms of access, therapeutic options, combinations, care implementation…



But more often than not, I am overwhelmed with gratitude for the infrastructure and resources…

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Added by Annie Kennedy on September 13, 2017 at 5:00pm — No Comments

MD Community Moves Forward ICD Code Nomination for Duchenne/Becker

Paperwork – oh the paperwork!

Each time you visit a physician’s office or hospital, we leave with piles of forms and papers detailing the visit. The providers seen, the prescriptions written, results from tests conducted, instructions for follow up, and more. And each of those pieces of…

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Added by Annie Kennedy on September 13, 2017 at 10:00am — No Comments

PDUFA VI Passes the Senate – Now Moves to President’s Desk to be Signed Into Law

The PDUFA VI bill – known as FDA Reauthorization Act in the House (FDARA) – passed the House of Representatives early in July with strong bi-partisan support. It then moved to the Senate but consideration was delayed until after the Senate healthcare reform deliberations were completed. Today, though, we are excited that a companion bill (mirroring the House version) passed in the Senate! It will now move to the President’s desk where it is expected…

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Added by Annie Kennedy on August 3, 2017 at 8:30pm — No Comments

The BENEFIT Act Passes the Senate!

Today – the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, S. 1052 – led by Sen. Roger Wicker (R-MS) and Sen. Amy Klobuchar (D-MN) passed in the Senate!

 

This means that – thanks to the leadership of our Senate champions and our Duchenne…

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Added by Annie Kennedy on August 3, 2017 at 12:33pm — No Comments

UPDATE - Action Alert: Your Calls Are Still Needed! Tell Your Senator to Vote NO on the Senate Health Bill

Yesterday the Senate voted 51-50 to move forward on healthcare reform legislation -- but no specific bill was actually voted on. The Senate has committed to passing something this week. Once passed, the Senate bill will then have to return to the House for passage or conferencing (if it differs from…

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Added by Annie Kennedy on July 26, 2017 at 9:00am — No Comments

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