State and federal policies impact nearly all aspects of life for those with SMA. Advocacy is critical in advancing SMA-related policies, and the voices of individuals with SMA and their families are incredibly important when reaching out to lawmakers who can have an impact on the community.
Our Legislative Goals
Our Legislative Goals
Our Advocacy Team actively works with key partners, including individuals with SMA and family advocates, to advance Cure SMA’s Greater Independence agenda and the following policy goals:
Ensure early detection and treatment for spinal muscular atrophy (SMA).
Ensure young adults and adults with SMA have the support services they need.
Ensure research funds new treatments and therapies for all people with SMA.
Ensure full and timely access to SMA treatments, therapies, and needed equipment.
Have questions? Contact the Cure SMA Advocacy Team at [email protected].
Advocacy Toolkit for 117th Congress
Cure SMA’s advocacy agenda was developed in response to direct feedback from the SMA community. We collected ideas from active members of the SMA community and then used a survey to establish our top priorities. As a result, we have created the below toolkit to help anyone advocating for these important issues during the 117th Congress. Click on the images below for a information on each key priority and Cure SMA’s position.
Advocacy Information Center
Below please find some advocacy resources for your use and advocacy actions that Cure SMA has taken on behalf of the SMA community.
Cure SMA’s Advocacy Principles and Priorities
Cure SMA Advocacy Activities
- 05/12/22: Cure SMA Highlights the Views of the SMA Community on DOT’s Accessible Lavatory Draft Rule
- 05/11/22: Cure SMA Supports Bipartisan Bill to Increase the Asset Limits within the SSI Program
- 05/09/22: Cure SMA Supports Bipartisan Bill that Promotes Rare Disease Engagement and Discovery at the FDA
- 04/27/22: Cure SMA Urges Congress to Support Additional NIH Research to Meet Unmet Needs of SMA Community
- 04/25/22: Cure SMA & Other National Organizations Support Investments in Individuals with Disabilities Education Act (IDEA) Programs
- 03/23/22: Cure SMA Comments on the Importance of Home-Based Services for Individuals with SMA and their Families
- 03/17/22: Cure SMA Highlights Air Travel Experience of Individuals with SMA who use Wheelchair in Comments for Public Meeting
- 02/28/22: Cure SMA asks Congress to Support Key SMA Community Priorities on Rare Disease Day 2022
- 02/28/22: Cure SMA Supports Bipartisan Legislation to Elevate Patient Perspective in All Phases of Drug Development & Approval
- 02/17/22: Cure SMA & Other National Organizations Urge Access to Assistive Technology & Medical Devices to Bridge Health Equity Gaps
- 02/03/22: Cure SMA Comments on PREVENT Pandemics Act Discussion Draft
- 01/31/22: Cure SMA & Other National Organizations Urge Congress to Finalize Caregiving Investments for People with SMA and Other Disabilities
- 01/15/22: Cure SMA & Other Disability Organizations Comment on Short-Term Changes to Make Airplane Lavatories More Accessible
- 01/14/22: Cure SMA & National Organizations Seek Full Funding for Federal Newborn Screening Programs
- 01/13/22: Cure SMA & 130+ Disability Organizations Respond to CDC Director on COVID-19 Impact on People with Disabilities & Chronic Conditions
- 12/01/21: Cure SMA Supports the Bipartisan 21st Century Cures 2.0 Act to Accelerate Development of Treatments and Cures
- 11/08/21: Cure SMA & Other Rare Disease Organizations Seek Robust Funding for Federal Newborn Screening Programs
- 10/30/21: Cure SMA Supports the Build Back Better Framework Provisions that Invest in Home and Community Based Services
- 10/29/21: Cure SMA & Other Neuromuscular Organizations Seek Approval of Legislation to Increase Disability Employment Opportunities
- 10/19/21: Cure SMA & Other Organizations Ask CDC for Additional Vaccine Booster Guidance for Individuals with Disabilities
- 10/15/21: Cure SMA Releases “In Their Own Words” Report that Highlights Caregiving Needs of Individuals with SMA
- 09/24/21: Cure SMA Responds to U.S. Senate Hearing on the Supplemental Security Income Program
- 09/13/21: Cure SMA Support Home and Community-Based Service Expansion in Energy and Commerce Committee Bill
- 09/09/21: Cure SMA Supports Direct Care Workforce Provisions in in Build Back Better Act
- 09/03/21: Cure SMA & Other National Organizations Urge Congress to Expand Savings Opportunities to More People With Disabilities
- 08/30/21: Cure SMA Provides Comments to Federal Advisory Committee Examining Barriers to Air Travel for Passengers with Disabilities
- 08/17/21: Cure SMA & Other National Organizations Urge Congress to Invest in Medicaid Home and Community-Based Services
- 08/09/21: Cure SMA Applauds the Introduction of the Bipartisan Real Emergency Access for Aging and Disability Inclusion for Disasters Act
- 08/09/21: Cure SMA Applauds the Introduction of the Disaster Relief Medicaid Act
- 08/04/21: Cure SMA Supports the Bipartisan 21st Century Assistive Technology Act
- 08/03/21: Cure SMA Supports Amendment to Bipartisan Infrastructure Bill to Increase Accessibility at Legacy Rail Transit Stations
- 07/26/21: Cure SMA & Other Organizations Seek Improvements to the Supplemental Security Income Program
- 07/20/21: Cure SMA Comments on Cures 2.0 Discussion Draft Legislation
- 06/28/21: Cure SMA Asks U.S. House to Support Newborn Screening Funding on 3-Year SMA RUSP Anniversary
- 06/28/21: Cure SMA Asks U.S. Senate to Support Newborn Screening Action on 3-Year SMA RUSP Anniversary
- 06/25/21: Cure SMA Supports Caregiving and Independent Living Investments and Provisions in S. 2210 / H.R. 4131
- 06/10/21: Cure SMA Asks Congress to Address the Caregiving Challenges of Individuals with SMA and other Disabilities
- 06/08/21: Cure SMA Supports Improvements to the Supplemental Security Income Program
- 05/04/21: Cure SMA & Other Organizations Seek Funding to Expand Knowledge of and Access to Assistive Technology Devices
- 04/30/21: Cure SMA & Other Organizations Seek Support for Bipartisan Legislation to Improve Access to Mobility Assistive Technology
- 04/21/21: Cure SMA Advocates for Greater Access to Independent Living Services in Legislative Proposal
- 04/14/21: Cure SMA and 80 Other Organizations Raise Concerns with Discriminatory Health Policies
- 03/23/21: Cure SMA Supports the Disability Access to Transportation Act to Promote Accessible Community Transportation Options
- 03/22/21: Cure SMA Urges State Medicaid Agencies to Expand Community Service for SMA Community
- 03/08/21: Cure SMA Supports Legislation to Fully Fund Educational Services and Related Supports for Children with SMA and Disabilities
- 03/03/21: Cure SMA Urges Senate to Support Final Action on Medicaid Home and Community-Based Services Provision
- 03/02/21: Cure SMA Supports the Bipartisan Reintroduction of the ABLE Age Adjustment Act
- 02/23/21: Cure SMA and 200+ Organizations Ask Congress to Retain Funding for Medicaid Home and Community Services in COVID Relief Legislation
- 02/22/21: Cure SMA Supports Legislation to Make Air Travel More Accessible for People with SMA
- 02/09/21: Cure SMA Supports the Reintroduction of the Bipartisan Newborn Screening Saves Lives Reauthorization Act
- 02/08/21: Cure SMA Comments on U.S. Department of Transportation’s Draft Strategic Plan on Accessible Transportation
- 02/02/21: Cure SMA Joins Others in Seeking Medicaid Home and Community Services in Next COVID-19 Package
- 01/26/21: Cure SMA Asks the Biden Administration for Immediate COVID-19 Vaccine Availability for SMA Community
- 01/25/21: Cure SMA Supports Reintroduction of the Disability Employment Incentive Act
- 01/12/21: Cure SMA Shares Priorities of the SMA Community with Congress
- 12/16/20: Cure SMA/Other Rare Disease Organizations Ask States to Provide Priority Access to COVID-19 Vaccine
- 11/06/20: Cure SMA/Other National Organizations Sign Letter of Concern Over American Airlines Wheelchair Weight Limit
- 10/23/20: Cure SMA/Other National Organizations Seek Protections for People with Disabilities in Vaccine Allocation
- 09/25/20: Cure SMA Letters to State Governors Regarding COVID-19 Vaccination for SMA Community
- 08/25/20: Cure SMA Seeks Priority Access for COVID-19 Vaccines for SMA Community
Find Your State Fact Sheet
Our state fact sheets include information about the impact of SMA on that state, disease and treatment options, as well as the status of newborn screening activities. Download the fact sheet for your state below and share in your advocacy efforts with legislators, media, event attendees, or other community outreach.