Support the Newborn Screening Saves Lives Reauthorization Act!

Ask Your Members of Congress to Cosponsor the Newborn Screening Saves Lives Reauthorization Act 

Very soon, Congress will consider the Newborn Screening Saves Lives Reauthorization Act, a very important newborn screening bill. In order to make sure this bill moves as quickly as possible, we need your help in getting Members of Congress to publicly support the bill by becoming cosponsors. 

While each state decides what conditions to screen for (including SMA), the national bill provides funding to states to help them expand screening, train staff and purchase new equipment and infrastructure for their newborn screening programs. It helps to ensure that tests are scientifically accurate, and make sure newborns and their families are referred to appropriate follow up services in a timely matter. It also renews the Secretary of Health's Advisory Committee on Heritable Disorders in Newborns and Children, which reviews conditions and makes reccomendations whether to add conditions to the Recommended Uniform Screening Panel (RUSP). This is the same panel that approved adding SMA to the RUSP this past July. If we are asking states to screen for SMA, we need to make sure they have the resources to do so. 

We know that early diagnosis is especially important for SMA patients and their families. We need you to let Congress know how important this bill is for our community. Act now to ask for their support of the Newborn Screening Saves Lives Reauthorization Act! 

Take Action

Tell your member of Congress to cosponsor the Newborn Screening Saves Lives Reauthorization Act! If you have any questions on this legislation, please contact us at advoaccy@curesma.org. 

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Support the Newborn Screening Saves Lives Reauthorization Act!

Dear [Decision Maker],

As someone impacted by spinal muscular atrophy (SMA), I am writing to ask you to become an original cosponsor for the Newborn Screening Saves Lives Reauthorization Act. We expect Rep. Lucille Roybal-Allard (D-CA) will introduce this bill in February. This legislation is crucial to ensuring that all newborns are being properly screened at birth for potentially life-threatening conditions and, if necessary, receive treatment as soon as possible.

Spinal muscular atrophy is the leading genetic cause of death for infants under the age of 2. It is a rare, genetic condition that causes degenerative neuron damage that can take away the ability to walk, eat, sleep and breathe. The success of treatment depends on early diagnosis, as it cannot repair neuron damage, but can slow down or even prevent it. Fortunately, SMA can be detected through newborn screening, and was added to the Recommended Uniform Screening Panel (RUSP) last summer. Currently, several states include SMA on their newborn screening panel, and several others are in the process of implementing this test.

The Newborn Screening Saves Lives Reauthorization Act provides essential support and funding to the states newborn screening programs, that allows them to improve, expand and enhance their programs. It provides resources to assure the scientific quality of these tests and to ensure staff have the proper training and equipment to carry out these tests. It also ensures that newborns who test positive for a condition, along with their families, receive the proper follow up care and services.

Newborn screening is an incredibly effective public health program, improving the health outcomes for millions of infants, while significantly reducing costs to the health system. On behalf of SMA patients, and their families, along with the millions of other families impacted by this program, I urge you to cosponsor the Newborn Screening Saves Lives Act. Thank you.

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Sincerely,

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

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