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:
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!