Action Alert! Continue Progress in the Fight Against Duchenne

Contact your Members of Congress – Today – and Ask Them to Support the FY 2020 Duchenne Appropriations Request

Recipients

  • Your Senators
  • Your Representative

Contact

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Message

Sign the FY 19 Duchenne MD Appropriations Letter

Dear [Decision Maker],

Help End Duchenne Muscular Dystrophy by Supporting:
Research, Expanded use of Patient Experience Data, and Enhanced Disease Surveillance

*Sign the FY 20 Duchenne MD Appropriations Letter*

Two decades ago, the total commitment to Duchenne research was nearly nonexistent. However, 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 capture important epidemiological data, information that has helped standardize patient care. These care standards have helped markedly lengthen and improve the lifespan of the average Duchenne patient.

Much progress has been made, thanks to the support of Congress but the fact is - Duchenne remains incurable and much work remains. Achieving future success requires continued support of programs and policies to support Duchenne research, public health and drug development efforts. We need your help. To support this work, please sign onto the annual Duchenne appropriations sign-on letter being led by Senators Roger Wicker (R-MS) and Debbie Stabenow (D-MI) or Congresswoman Doris Matsui (D-CA) and Congressman Peter King (R-NY)].

This letter seeks support for key Duchenne programs and policies including:

Continued funding to support muscular dystrophy disease surveillance and related activities at the Centers for Disease Control and Prevention (CDC), including updates on Duchenne newborn screening and on the use of the new ICD-10 diagnostic code.

Expansion of Duchenne research supported by the National Institutes of Health (NIH), particularly activities focused on new types of efficient clinical trials and on questions related to gene therapy treatments.

Further development of patient-focused drug development activities at the Food and Drug Administration (FDA) intended to ensure the patient perspective is listened to by those reviewing drug applications and incorporated into product labels.

Because of the work of past Congresses, we have made significant progress against Duchenne in recent years as evidenced by research breakthroughs, increases in lifespan and quality of life and approval of therapies for some forms of the disease. But much more work remains and your support of the FY 20 Duchenne appropriations sign-on letter will help us achieve future gains. I urge you to sign onto this important letter which means so much to me and my family.

Please contact Samantha Elleson with Senator Wicker at (Samantha_Elleson@wicker.senate.gov) or Lorenzo Rubalcava with Senator Stabenow at (Lorenzo_Rubalcava@dpcc.senate.gov); or in the House, contact Kristen Donheffner with Rep. Doris Matsui at (Kristen.Donheffner@mail.house.gov) or Deena Tauster with Rep. Peter King at (Deena.Tauster@mail.house.gov) to sign onto the letter or if you have any questions.





Thank you for considering this request

Sincerely,
[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]