Success on Funding Letter, Time to re-engage on the MD-CARE Act


Thanks to your efforts, we closed the House and Senate funding letters with the support of 30 House members and 12 Senators. Great work! We appreciate everyone who sent emails and made calls to their members of Congress.

The members below collectively sent a strong message to the House and Senate appropriations committees who produce the bills that fund the federal agencies that impact Duchenne – NIH, FDA, and CDC. Their message – Duchenne MUST remain a federal priority. 

House

Doris Matsui

Tim Bishop

Peter King

Mike Michaud

Diana DeGette

Jan Schakowsky

William Keating

Michael Patrick Hayes

Chris Smith

John F. Tierney

Chaka Fattah

Michael Grimm

Jim Moran

Eliot L. Engel

Charles B. Rangel

Jim Gerlach

Alcee Hastings

Brian Higgins

Spencer Bachus

Carol Shea-Porter

Stephen F. Lynch

John A. Yarmuth

Theodore E. Deutch

Frank Wolf

Collin C. Peterson

David Cicilline

Tony Cardenas

Derek Kilmer

Danny K. Davis

Adam Smith

John Culberson (individual letter sent)

 

 

Senate


Wicker

Markey

Stabenow

Klobuchar

Schumer

Brown

Boxer

Gillibrand

Hirono

Stabenow

Warren

Collins

Booker (individual letter sent)

 

 

  

Here is the specific report language we requested these members send along with a message about ensuring appropriate funding levels remain at all agencies:

 

  • National Institutes of Health, Office of the Director
    Duchenne Muscular Dystrophy: The Committee is encouraged that NIH support for earlier stage research in Duchenne muscular dystrophy has successfully resulted in a substantial pipeline of new potential therapeutics for Duchenne. In order to provide a smooth transition for these projects into clinical development and to increase the potential for success, the Committee urges NIH to Increase support for late stage preclinical and early stage clinical projects; and to consider partnering with outside entities, including patient organizations and industry, to organize a consortium focused on the rapid identification and qualification of new biomarkers for Duchenne.

  • Centers for Disease Control and Prevention, National Center for Birth Defects and Developmental Disabilities
    $6.0 million in FY 15 for Muscular Dystrophy program
    Duchenne Muscular Dystrophy: The Committee recognizes the quality of life impact of the Duchenne Muscular Dystrophy Care Considerations and commends the agency for its initiative to expand the tool to care for adults with this disease. The Committee also encourages the CDC to address access to care and disease-related morbidity, comorbidity, and quality of life for individuals with Duchenne from traditionally underserved populations.

  • Food and Drug Administration
    Duchenne Muscular Dystrophy: The Committee commends the collaboration between the FDA and the Duchenne Muscular Dystrophy community to advance useful regulatory tools for benefit-risk considerations in this disease population and drug development guidance. The Committee supports the agency’ s engagement with the patient population for these purposes and to enable the appropriate use of regulatory flexibility as provided in the FDA Safety and Innovation Act of 2012.

 

You might be wondering why we do both a funding letter AND the MD-CARE Act?

Regardless if the MD-CARE Act passes, we need to ensure there is a federal focus on Duchenne - that is why we do a funding letter every year. The MD-CARE will help shape the next 5 years for the muscular dystrophies. The funding letter allows us to focus in on Duchenne every year.

 

Time to turn our efforts back to MD-CARE Act

We must now pivot back to the securing cosponsors for the MD-CARE Act. 

To date, because of your efforts, we stand at 94 House cosponsors and 25 Senate.

 

NEW Goal for April - Let’s secure 100 House members and 30 Senators!

Take action now.


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