Be A Part of Cure SMA's Valentine's Day Advocacy Campaign and Support the Newborn Screening Saves Lives Reauthorization Act

By Cure SMA | Published On January 29, 2019

Be A Part of Cure SMA's Valentine's Day Advocacy Campaign and Support the Newborn Screening Saves Lives Reauthorization Act

With Valentine’s Day rapidly approaching, we are showing our love for the Newborn Screening Saves Lives Reauthorization Act! Take action to support this very important bill by sending a Valentine’s Day card to your Members of Congress.

Valentine’s Day Advocacy Campaign

Be an advocate for newborn screening! It is time to get artistically creative and have some fun with your family, by decorating a Valentine’s Day card to send to your Members of Congress. To participate in the Valentine’s Day Advocacy Campaign and get all the details, click here. Show your support for this critical newborn screening legislation and let your lawmakers know how important this bill is!

We expect the Newborn Screening Saves Lives Reauthorization Act to be reintroduced to the new congress in February by Representative Lucille Roybal-Allard (D-CA). In order to give SMA patients the very best treatment, we need to diagnose the condition as soon as possible, which may be long before they start showing symptoms. Newborn screening is the most efficient and effective way to do this. This legislation will renew federal programs and funding to help enhance and improve each of the states newborn screening programs. The Newborn Screening Saves Lives Reauthorization Act is imperative to newborns nationwide.

Keep an eye out for more news from us on more ways to be involved and advocate for this important legislation!

The Importance of Advocacy

This past July, Health and Human Services Secretary Alex Azar officially approved adding SMA to the official federal recommendations for newborn screening. Although this is a significant and important step, it is only the beginning. Each state decides what conditions it will include in its screening panel. We must continue to work to make sure that every state screens for SMA.

Through advocacy and policy, Cure SMA continues to empower our communityand give a voice to individuals and families that are faced with the daily challenges of SMA. We work with legislators, regulators and officials in Washington D.C. and in the states to advocate on behalf of our community. Thanks to the dedicated advocacy of our community, Cure SMA has been at the forefront of federal- and state-level work for newborn screening. If you have any questions, stories, ideas or concerns that are related to advocacy and policy, please feel free to send us a message at advocacy@curesma.org. Your voice and participation in advocacy are critical to our success.

Be sure to visit our website or follow us on Facebook or Twitter for updates. Working together, we can save the lives of babies born with SMA.

Topics: Community & Awareness, Advocacy, Front Page News

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