Urge your House and Senate Members to Support the FY 2024 Duchenne Funding Request & BENEFIT Act
It’s that time of year again. Members of the House and Senate are working, right now, to develop and submit their policy priorities for the annual spending bills that will fund the NIH, CDC, DOD, FDA, and other key federal agencies for 2024.
We need you to contact your House and Senate members as soon as possible and urge them to continue making Duchenne patient care, public health, and research a top priority. Click here to learn more about this year’s request to Congress.
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Support the FY 2024 Duchenne Appropriations Request and the BENEFIT Act
Dear [Decision Maker],
In 2001 Congress enacted the Muscular Dystrophy Community Assistance, Research and Education or MD CARE Act, which dramatically transformed efforts to combat Duchenne and other forms of Muscular Dystrophy. As a result of this Act and subsequent amendments, federal commitments to research expanded, helping spur scientific breakthroughs to develop potential therapies. These commitments have also leveraged significant non-federal funding from academic institutions, industry, and venture investors in a true public-private partnership model. In addition to research breakthroughs, the MD CARE Act has helped standardize patient care. These care standards have helped markedly lengthen and improve the lifespan of the average Duchenne patient.Achieving future success requires the continued support of programs and policies to support Duchenne research, public health and drug development efforts. We need your help. To support this work, our first request is for you to please sign onto the annual Duchenne appropriations sign-on letter being led by Senators Roger Wicker (R-MS) and Debbie Stabenow (D-MI) in the Senate and Congresswoman Doris Matsui (D-CA) and Congressman Troy Balderson (R-OH) in the House. This letter seeks support for key Duchenne programs and policies including:$8 million for CDC's Muscular Dystrophy Program funding and requests CDC evaluate the impact of Care Considerations as identified in the recent report to the Committee. $15 million for the Duchenne Muscular Dystrophy Research Program within DOD's Congressionally Directed Medical Research Programs (CDMRP) Requests NIH produce a progress report on the Wellstone Centers Requests FDA support the development of patient experience data to inform clinical research design and regulatory reviews. Requests HRSA recommend expedited consideration of Duchenne for newborn screening and incorporation of the patient community voice in the review.I urge you to sign onto the FY24 letter which means so much to me and my family. To sign on to the Senate letter, please contact Sally Farrington Sally_Thompson@Wicker.Senate.gov in Senator Wicker's office or Julia Johnston firstname.lastname@example.org in Senator Stabenow's office.To sign the House letter, please contact Jackie Weinrich (email@example.com) with Rep. Matsui or Megan Porter (firstname.lastname@example.org) with Rep. Balderson.
Sincerely,[Your Name] [Your Address] [City, State ZIP][Your Email]