House and Senate Funding Letter - FY16

Action Alert

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  • Your Senators
  • Your Representative

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Message

Please sign the FY 16 Duchenne MD appropriations sign-on letter

Dear [Decision Maker],

I am writing to you today because someone I care about has Duchenne muscular dystrophy.

Duchenne Muscular Dystrophy is the most common lethal genetic disorder diagnosed in childhood. Affecting about 1 of every 3,500 boys, Duchenne is typically diagnosed during the first few years of life. A muscle wasting disorder, Duchenne gradually robs boys of their ability to walk by their teenage years. Over time, their muscles weaken further to the point of paralysis, most living only until their mid-twenties. This is a race against time.



Congress passed amendments to the MD-CARE Act in 2014, continuing the momentum started in 2001 with the original passage of the bill.
The MD-CARE Act continues to change lives by ensuring all the relevant agencies are working together to make gains in care and therapeutic development for Duchenne. Before the MD-CARE Act there was 1 company invested in developing a drug for Duchenne. Today there are well over 40 companies thanks to the public private partnership started by the MD-CARE Act.

We must continue building upon these successes and move closer to achieving the goal of ending Duchenne by supporting Duchenne research, public health and therapy development initiatives.

Please sign the FY-17 Duchenne MD appropriations sign-on letter being circulated by Representatives King and Matsui in the House and Senators Wicker and Stabenow in the Senate.
:
The FY 17 Duchenne request will:

Increase funding for the Centers for Disease Control and Prevention's (CDC) Muscular Dystrophy program by $500,000 to implement the updated care standards, expand surveillance, and develop a newborn screening program.

Drive expanded research at National Institutes of Health's (NIH), advance combination therapies and trial readiness, and call for a follow-on exon skipping meeting.

Urge the Food and Drug Administration (FDA) to use its tools and authorities, including intermediate clinical endpoints (ICE), to approve safe and effective treatments as quickly as possible

Continue driving forward other important provisions of the MD CARE Act Amendments, which became law in late 2014.

HOW YOU CAN HELP - Please sign the FY17 Duchenne MD appropriations sign-on letter being circulated by contacting Representatives King or Matsui in the House and Senators Wicker or Stabenow in the Senate.

We hope with your support we can continue to move mountains. If you have any questions, please do not hesitate to contact me.

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