Cure SMA Action Center

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Latest Action Alerts

Encourage Non-Screening States to Act Today on Newborn Screening for SMA!

Cure SMA has set up state-specific Action Alerts to allow residents of non-screening states to send personalized letters to state leaders in support of SMA newborn screening. Take Action ▸

Support the Ongoing Needs of the SMA Community during COVID-19

The COVID-19 public health emergency has created new challenges for children and adults with SMA who receive home health care, personal care assistance, and related services that are delivered in a home or community setting. Educate Congress now about the unique needs of children and adults with SMA. Take Action ▸

Support Funding for Newborn Screening Activities!

Congress is preparing work to fund government programs and activities for next fiscal year (2021). Given the importance of an early diagnosis in treating rare diseases, such as spinal muscular atrophy (SMA), we need your help to ensure newborn screening programs are fully funded. Take Action ▸

Increase Accessible Transportation Options

Help expand accessible transportation options for people living with SMA. Take Action ▸

Support Affordable and Accessible Housing

Help expand affordable housing for individuals with disabilities. Take Action ▸

Support Funding for Job Training and Employment Supports

Tell Congress to support funding for job training and employment supports. Take Action ▸

Action for SMA

There are multiple ways that you can be an SMA advocate, and one of the most effective ways involves working with elected officials. It is crucial that your elected officials—both at the local and federal levels—hear from you about issues that directly affect you. No one can tell your story the way you can!

To be an effective advocate, it’s important to understand the different levels of government along with the state and federal legislative processes. While you can engage in advocacy at any time, there are points in the legislative process when your argument will be the most impactful. Click below to learn more about the types of legislation.



Advocacy Materials

Cure SMA has developed materials that you can use to prepare for and execute your advocacy efforts. Some materials may be customizable, while other are ready to print and go.