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…
Added by Annie Kennedy on February 12, 2018 at 9:30am — No 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…
Added by Annie Kennedy on February 12, 2018 at 9:30am — No 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…
ContinueAdded by Annie Kennedy on January 17, 2018 at 10:30am — 2 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…
ContinueAdded by Annie Kennedy on January 9, 2018 at 3:30pm — No Comments
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,…
ContinueAdded by Annie Kennedy on December 5, 2017 at 9:00am — No Comments
Added by Annie Kennedy on November 20, 2017 at 6:30pm — No 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 advisory committee on newborn…
ContinueAdded by Annie Kennedy on November 20, 2017 at 6:30pm — No 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…
ContinueAdded by Annie Kennedy on November 15, 2017 at 1:46pm — No 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:
Added by Annie Kennedy on November 9, 2017 at 9:58am — No Comments
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 it's like to serve on the PPMD Adult Advisory Committee (PAAC) from current members…
Added by Annie Kennedy on November 8, 2017 at 2:30pm — No Comments
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…
ContinueAdded by Annie Kennedy on November 3, 2017 at 10:00am — No Comments
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 adequate and well-controlled…
ContinueAdded by Annie Kennedy on November 2, 2017 at 9:30am — No Comments
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 Committee…
ContinueAdded by Annie Kennedy on October 30, 2017 at 11:37am — No Comments
“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…
ContinueAdded by Annie Kennedy on October 4, 2017 at 1:00pm — No Comments
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…
ContinueAdded by Annie Kennedy on September 19, 2017 at 10:00am — No Comments
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 available to our Duchenne community. The rich collaborations and strong…
Added by Annie Kennedy on September 13, 2017 at 5:00pm — No Comments
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 paper includes numerous codes that allow for tracking…
ContinueAdded by Annie Kennedy on September 13, 2017 at 10:00am — No Comments
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…
ContinueAdded by Annie Kennedy on August 3, 2017 at 8:30pm — No Comments
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 community – the agency’s signature tool for evaluating…
ContinueAdded by Annie Kennedy on August 3, 2017 at 12:33pm — No Comments
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 the House version). Then it moves to the President's desk to…
ContinueAdded by Annie Kennedy on July 26, 2017 at 9:00am — No Comments
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