Action Alert- Ensuring Federal Agencies Working on Duchenne Receive Proper Funding

Though the MD-CARE Act remains our top priority, we need to ensure that agencies receive adequate funding and direction for the programs that are so critical to our community. One tool we use to ensure that funding and direction is our Congressional funding letter. It has made a tremendous impact on appropriations. 

To illustrate this point, let’s look at how our yearly funding letters have impacted the NIH’s ability to consistently fund Duchenne at an impressive level:

This is why the funding letter is so important!  We need to keep the pressure on Congress in order to keep Duchenne as a priority. The investment to date is over $250 million on Duchenne! 

Send an email to your member of Congress Today! 

Here are some answers to common question we are getting regarding this effort:

Why are we asking Congress to support the funding letter AND the MD-CARE Act?

About the MD-CARE Act – The legislation sets the framework for 5 years and gives the agencies working on Duchenne proper direction about what needs to be focused on since the last reauthorization. The bill also helps to coordinate those agencies so that they are working together and communicating with each other about Duchenne related activities. The bill frames the current environment and puts a proper focus on the Muscular Dystrophies. The MD-CARE Act  is banner legislation for the Muscular Dystrophies.

About the Funding letter - We concentrate on the funding piece every year.  In order to ensure parity in funding for Duchenne, we ask congress to continue funding the agencies that matter to us at a sufficient level to meet the needs Duchenne programs. The funding letter also includes important provisions through report language to focus the agencies (NIH, CDC, FDA) working on Duchenne. This ensures that if the MD-CARE Act is not reauthorized we are still giving the agencies direction on Duchenne related activities every year.


What if my member has not signed on to the MD-CARE Act yet as a cosponsor?

We’d like to focus on the funding letter for the next few weeks even if you member still hasn’t cosponsored the bill. We will return to our push for cosponsors in the coming weeks. 

How can YOU help?

At this moment, the House Dear Colleague supporting our funding request and report language is currently being circulated by Rep. Peter King and Rep. Doris Matsui

We are asking members of Congress to sign onto the Duchenne funding letter to continue the amazing federal investment we have seen to date. 

It will take you 1 minute to help!  Send an email to your member of Congress today! 

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Comment by Ryan Fischer on March 17, 2014 at 10:12am

Keith- Here is the full letter 

Jason- The MDA sets it's own policy and strategy. You should feel free to reach out to them with your request. I believe they posted the petition on FB. Right now the MD-CARE Act needs cosponsors in order to move the legislation to the next phase- committee action. That takes constituents reaching out to their members directly and explaining the impact of the legislation to date.  i do believe we are at a place with potential therapies due to the road laid out by the MD-CARE Act so i can certainly see how the two are connected. We have posted on FB and our site in the hopes increasing traffic to the petition. 

Comment by Jason Darienzo on March 16, 2014 at 8:45pm
Comment by Keith Van Houten on March 16, 2014 at 7:50pm

Can you post the full request referred to in the Dear Colleague letter?  The link only has a letter that says its attached.

Comment by Jason Darienzo on March 14, 2014 at 2:42pm

Hi Ryan

Do you think there is a way to use the Whitehouse petition to help leverage Congress on the MD-CARE Act?

If so, I was wondering if you or someone from PPMD could contact the MDA regarding using the Whitehouse petition in this way. I think if the MDA could get some or all of the stars that appeared on the telethon last year to Twitter support for the petition it would really help get the 100,000 signatures needed for the Whitehouse respond and to push Congress to vote yes on the MD-CARE Act.

For example Ryan Seacrest who hosted the telethon has 12 million Twitter followers

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