FY17 House and Senate Action Alert - Funding Letter & Report Language

funding letter


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Please sign the FY 17 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.

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.


HOUSE: Please contact Megan Sussman with Rep. Matsui at 5-7163 or Jamie Matese with Rep. King 5-7896.
SENATE: Please contact Sarah Lloyd Stevenson with Sen. Wicker at 4-6523 or Kim Corbin with Sen. Stabenow at 4-4822,

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