As you know, PPMD has been helping to lead national advocacy efforts around the 21st Century Cures/ Senate Innovation legislation for more than two years and we now have a very short window of opportunity in which the Senate can act to finalize this legislation and then both chambers can ‘conference’ these bills, come to agreement, and sign this game-changing legislation into law.
You’ll recall that this package includes many provisions that are critical to our community including our Patient Focused Impact Assessment Act (PFIA, S 1597), provisions within each bill that create expedited pathways for follow-on exon development, data-sharing incentives, expanded access provisions, and much more. In addition, federal funding the the federal agencies that serve as the life blood to our research and research infrastructure pipelines would receive essential boosts including NIH and FDA. We cannot afford for this bill to not be signed into law by this Congress.
We are turning to you, the Duchenne community, to help spread the word on social media today about today’s National 21st Century Cures/Senate Cures Day of Action. PPMD has joined our partners, the EveryLife Foundation and Research!America — as well as many other rare disease communities throughout the nation — in today’s effort .
We know that you are all super busy — so this can be quick and easy. The focus is today only and this push is our chance to unite across organizations to get the legislation to the Senate floor.
Please take a few minutes to either call, email, or tweet your members of Congress today. All the information and tools you'll need is are at the links below.
Once you have done so, please consider sharing this information on your Facebook or social media pages and with your friends, neighbors, spheres of influence.
Thank you for helping us to get this over the finish line!