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ACTION ALERT: Urge Your Senators to Sign the FY18 Duchenne Funding Letter

Action Alert

 

Please urge your Senate members to sign the FY18 Duchenne funding letter. Help ensure the agencies that impact Duchenne receive the funding they need to concentrate on the needs of our community!

After you send the alert below, we ask that you follow up with a quick phone call to your Senate members by calling 202-224-3121.

When you are connected to your member you can say to the person who answers the phone:

"Please tell Senator_____ to sign onto the Duchenne funding letter being circulated by Senators Wicker and Stabenow"

Recipients

  • Your Senators

Contact

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Message

Please Sign the FY 18 Duchenne MD Appropriations Letter

Dear [Decision Maker],

Help End Duchenne Muscular Dystrophy by Supporting Research, Patient Engagement and Enhanced Disease Surveillance

*Sign the FY 18 Duchenne MD Appropriations Letter*

Deadline to Sign: Friday May 19th.

Fifteen years ago, the total commitment to Duchenne research was nearly nonexistent. However, in 2001 Congress enacted the Muscular Dystrophy Community Assistance, Research and Education or MD CARE Act, which dramatically transformed efforts to combat Duchenne and other forms of Muscular Dystrophy. As a result of this Act and subsequent amendments, federal commitments to research expanded, helping spur scientific breakthroughs to develop potential therapies. These commitments have also leveraged significant non-federal funding from academic institutions, industry and venture investors in a true public-private partnership model. In addition to research breakthroughs, the MD CARE Act has helped capture important epidemiological data, information that has helped standardize patient care. These care standards have helped markedly lengthen and improve the lifespan of the average Duchenne patient.

The Fiscal Year 2018 Duchenne MD appropriations request contains language and provisions to help continue and strengthen these and other ongoing initiatives. Specifically, the request would:

Call for a public workshop to further the validation and qualification of Duchenne biomarkers.
Ensure access to data from federally funded research.
Request a status report on the FDA's progress towards implementing patient-focused drug development and targeted-therapies for rare disease provisions in 21st Century Cures.
Maintain the funding for the Centers for Disease Control and Prevention's (CDC) Muscular Dystrophy program to implement the updated care standards, expand surveillance, develop a newborn screening program, and to support refinement of an International Classification of Disease (ICD 10) code for Duchenne and Becker Muscular Dystrophy.



To sign on or if you have any questions, please contact Sarah Lloyd Stevenson with Sen. Wicker at 4-6523 or Lorenzo Rubalcava with Sen. Stabenow at 4-4822 to sign on.

We strongly urge you to sign onto the request. Thank you for your ongoing support of our community and to rare diseases communities like ours.

Sincerely,
[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]

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