Current Action Alerts
NATIONAL:
Urge Your Senators to Sign the FY26 Appropriations Letter
This critical letter, led by Senator Roger Wicker (R-MS) and Amy Klobuchar (D-MN) in the Senate, requests vital federal funding and program direction to advance research, therapy development, and public health initiatives for Duchenne and Becker. Thanks to strong Congressional support, there has been real progress, but we cannot afford to lose momentum.
Click here to take action today!
Urge Congress to Protect Medicaid
Congress recently passed a federal budget resolution that sets the stage for $880 billion in Medicaid cuts over the next decade. This unprecedented threat to Medicaid would have devastating consequences for individuals and families living with Duchenne, Becker, and other rare diseases who rely on this essential program for life-sustaining care.
Take action: Tell your representatives to protect Medicaid and reject harmful cuts.
Click here to take action today!
PPMD’s 2025 Advocacy Conference: Urge Congress to support the FY 2026 Duchenne funding request, protect Medicaid, and reauthorize the Priority Review Voucher (PRV) program
Click here to take action today!
Ask Congress to Protect NIH Research Funding for Duchenne
On February 7th, the National Institutes of Health (NIH) announced a drastic reduction in overhead funding for universities, medical centers, and other research institutions—from 50% down to just 15%. This significant cut threatens the ability of these institutions to continue critical research, including groundbreaking work on advancing treatments for Duchenne and Becker muscular dystrophy.
We are hearing from researchers that without this funding, their work may be forced to stop. This would be a devastating setback for our community and for the progress we’ve made in the fight to end Duchenne. Overhead funding, or indirect costs, help provide support to essential research related activities such as development and maintenance of laboratories, to help support administrative roles key to compliance with regulatory bodies, and other non-research activities like clinical trial infrastructure support.
While PPMD supports efforts to ensure government efficiency and responsible spending, funding decisions of this magnitude should be made through a thorough and transparent review process. Sudden, sweeping cuts without proper evaluation have the potential to undermine vital research that directly impacts the lives of those in our community.
We need your voice! Contact your elected officials today and urge them to protect NIH research funding. Let them know how essential this support is for the Duchenne and Becker community. Every email makes a difference!
Click here to take action today!
STATES:
Arizona
Urge the Arizona State Legislature to vote YES on SB 1076, which adds Duchenne muscular dystrophy to the state’s Newborn Screening panel. Click here to take action today!
Arkansas
Urge the Arkansas State Legislature to vote YES on HB 1302, which adds Duchenne muscular dystrophy to the state’s Newborn Screening panel. Click here to take action today!
Connecticut
Urge the Connecticut Joint Appropriations Committee to vote YES on HB 6919, which adds Duchenne muscular dystrophy to the state’s Newborn Screening panel. Click here to take action today!
Florida
HB 1089 and its companion, SB 524, would add Duchenne to Florida’s newborn screening panel. These bills have cleared committee unanimously—now we need Governor DeSantis to sign it into law and ensure every Florida baby is screened for Duchenne at birth. Click here to take action today!
Georgia
Urge the Georgia State Legislature to vote YES on SB 101, which adds Duchenne muscular dystrophy to the state’s Newborn Screening panel. Click here to take action today!
Illinois
Contact the state’s Senate Appropriations committee and urge them to support SB 2261 and include Duchenne newborn screening funding in the Illinois state budget. Click here to take action today!
Oregon
Urge the Oregon State Legislature to support SB 2261 and include Duchenne newborn screening funding in the Illinois state budget. Click here to take action today!
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