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ACTION ALERT: Urge Lawmakers to Keep Driving Progress in the Fight to End Duchenne

Urge your Lawmakers to Sign the FY 17 Duchenne Appropriations Letter!

 

Today and tomorrow, scores of PPMD advocates will be on Capitol Hill to urge their Senators and Members of Congress to continue supporting vital efforts that will move us closer to ending Duchenne.

 

Thanks to Congress over the past 15 years, we have seen significant federal commitments to Duchenne research and related programs. These commitments have helped spur research breakthroughs, have led to development and issuance of care standards that have helped enhance the quality of care, and have gathered valuable patient data.

 

But much more remains to be done. 

 

To ensure continued progress in the fight against Duchenne, join your fellow advocates on Monday and Tuesday by contacting your Senate and House members to ask that they sign the Fiscal Year 2017 Duchenne Appropriations Letter!

Take Action

 

The FY 17 Duchenne request will:

 

  • Increase funding for the Centers for Disease Control and Prevention’s (CDC) Muscular Dystrophy program by $500,000 to implement the updated care standards, expand surveillance, and develop a newborn screening program.

 

  • Drive expanded research at National Institutes of Health’s (NIH), advance combination therapies and trial readiness, and call for a follow-on exon skipping meeting.

 

  • Urge the Food and Drug Administration (FDA) to use its tools and authorities, including intermediate clinical endpoints (ICE), to approve safe and effective treatments as quickly as possible.

 

  • Continue driving forward other important provisions of the MD CARE Act Amendments, which became law in late 2014.

 

The letters are being led by longtime Duchenne champions Senators Roger Wicker (R-MS) and Sen. Debbie Stabenow (D-MI) and Representatives Doris Matsui (D-CA) and Peter King (R-NY).

To makes sure your Members of Congress sign onto the letter, here is what you need to do:

 

1. Send your members an email:


We make it easy with a few clicks! Please also share this link with friends and family.

Take Action

 

2. Make a phone call:

  • When you are connected to the office, ask to speak to the Healthcare Legislative Assistant (Health LA).

  • When you are connected to a staffer, briefly explain who you are, why you are calling and what you would like:

    • Include your name, town and your connection to Duchenne.

    • Explain that PPMD is holding its annual advocacy conference this week and that while you could not travel to Washington you wanted to join the effort.

    • Explain briefly what Duchenne is and how it has impacted your life.

    • Note the gains in recent years, thanks in large part to previous Congressional actions including the MD-CARE Act and its amendments and the annual appropriations provisions.

    • The FY 17 Duchenne funding letter will soon be circulating. In the House by Representatives King and Matsui and Senators Stabenow and Wicker.

    • Ask the staffer to ask his/her boss to sign onto this letter.

    • Get the staffer’s name and phone number/email address. Promise to call back within a week to check in and leave your contact information.

 

If the staffer poses any questions you cannot answer, please let PPMD know and we will work to circle back. Follow this same process with your other Senator and House Member.

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