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ACTION ALERT: Urge Your Representative to Sign the FY 18 Duchenne Appropriations Letter

Action Alert


Please urge your House member 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! Please take action TODAY!


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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, March 31, 2017

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 Megan Herber ( with Rep. Matsui at 5-7163 or Jamie Matese ( with Rep. King 5-7896.

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.

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

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