Current Action Alerts
NATIONAL:
Urge Congress to Sign the FY26 Appropriations Letter
This critical letter, led by Representatives Doris Matsui (D-CA) and Troy Balderson (R-OH) in the House, requests vital federal funding and program direction to advance research, therapy development, and public health initiatives for Duchenne and Becker.
Click here to take action today!
Urge Congress to Protect Medicaid
On April 10th, Congress passed a budget resolution bill that includes up to $880 billion in Medicaid cuts over the next decade. These cuts pose an urgent threat to individuals and families living with Duchenne, Becker, and other rare diseases, many of whom rely on Medicaid for essential services.
We need your voice now more than ever. As lawmakers begin work on implementing the budget, it’s critical they understand how harmful these cuts would be.
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
Urge the Florida State Legislature to vote YES on HB 1089 / SB 524, which adds Duchenne muscular dystrophy to the state’s Newborn Screening panel. 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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