Parent Project Muscular Dystrophy

One Voice to End Duchenne: Parent Project Muscular Dystrophy

We need your voice to help save important Duchenne programs at the CDC!

Dear Advocates,

The Administration's Fiscal Year 2013 budget request again proposes to consolidate muscular dystrophy and other programs within the CDC's National Center for Birth Defects and Developmental Disabilities (NCBDDD) and to eliminate the funding level for the center.  The work of the NCBDDD is directly responsible for much of the progress made over the last decade to improve care of those with Duchenne.  Specifically, the development and issuance of the Care Considerations have increased the life expectancy by approximately 10 years, a remarkable improvement. 

Efforts to consolidate the activities of the NCBDDD threaten to slow down the gains we have made in treating Duchenne, including our current challenge of updating and reissuing the care considerations to reflect care needs of adults with Duchenne.

Taking Action:

PPMD, along with other stakeholders in the disability community, are urging our advocates to contact their Congressional representatives to ask that they sign on to a Dear Colleague letter being circulated by Reps. Dan Burton (R-IN) and Barbara Lee (D-CA) that expresses concern to CDC Director Tom Frieden about the proposed consolidation of the NCBDDD. 

Thanks in part to advocacy efforts by the disability community last year, the proposed consolidation was stopped.  We are asking for your support this year to achieve a similar result. 

Thank you for all of your hard work. Let’s keep up the outstanding advocacy!


Our Mission:
To end Duchenne. We accelerate research, raise our voices in Washington,
demand optimal care for all young men, and educate the global community.

© Parent Project Muscular Dystrophy 2010 - All Rights Reserved.
401 Hackensack Avenue, 9th Floor, Hackensack, NJ 07601

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