We need your voice to help save important Duchenne programs at the CDC!
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
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
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.
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!
CONTACT YOUR MEMBER OF CONGRESS