Advocacy
State and federal policies impact nearly all aspects of life for people with spinal muscular atrophy (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.
Quick Links
SMA Advocacy Priorities
Cure SMA actively works to advance Cure SMA's Greater Independence agenda and the following policy goals of the SMA community. Click on the images below for information on each key priority and Cure SMA’s position.
Principles & Priorities: Transportation
Report: Good but Mostly Bad and Ugly of Air Travel for Individuals with SMA
Action Alert: Help Make Transportation More Accessible for People with SMA and Their Families
State Fact Sheet: Make Parking More Accessible for Individuals with SMA
Principles & Priorities: Healthcare
Principles & Priorities: Report: Addressing the Underserved Healthcare Needs of Military Service Members, Veterans and thier Families
Federal Fact Sheet: Save and Improve Lives Through Newborn Screening
Action Alert: Support Federal Research in Spinal Muscular Atrophy
Action Alert: Remove Barriers to Life-Saving Treatments
Principles & Priorities: Housing
Federal Fact Sheet: Promote Independent Living, Employment, and Economic Self-Sufficiency
Federal Fact Sheet: Address the Lack of Accessible Housing for Individuals with Disabilities
Action Alert: Promote Access to Accessible and Affordable Housing for Individuals with SMA
Principles & Priorities: Employment & Financial Security
Federal Fact Sheet: Promote Independent Living, Employment, and Economic Self-Sufficiency
Action Alert: Promote Employment Opportunities for Individuals with SMA and other Disabilities
Action Alert: Help Individuals with SMA Save for their Financial Futures
Principles & Priorities: Disability Rights
Federal Fact Sheet: Eliminate Marriage Penalty for People with SMA
State Fact Sheet: Promote Representation of People with Rare Disease
Action Alert: Eliminate the Social Security Marriage Penalty for People with SMA and other Disabilities
Principles & Priorities: Technology
Federal Fact Sheet: Promote Access to, And Coverage of, Assistive Technology
Action Alert: Support Access to Assistive Technology for People with SMA
Principles & Priorities: Education
State Fact Sheet: Make Playgrounds More Accessible for Children with SMA
Federal Fact Sheet: Support Inclusive Education for Students with SMA
Action Alert: Ensure Children with SMA Can Access Educational Supports in School
Principles & Priorities: Emergency Preparedness
Federal Fact Sheet: Ensure Emergency Disaster Response Meets Needs of People with SMA
Action Alert: Ensure the Needs of People with SMA are Met in Times of Emergency and Disaster
Toolkit: Caregiving
Report: National Report on Caregiving
Action Alert: Ensure Individuals Can Access In-Home Caregiving Supports
Report Fact Sheet: National Report on Caregiving for Individuals with SMA
State Fact Sheet: Paid Family Caregiver for People with SMA
State Fact Sheet: Make Bathrooms Accessible for All Individuals with SMA
Do It Yourself (DIY) Advocacy Toolkit
Resources to Help You Advocate
SMA State & Local Toolkit
Tips For Connecting With Your Officials
SMA Awareness Month Advocacy
Hover over the map to find your state fact sheet.
Advocacy Update Series
Check out Cure SMA’s new monthly advocacy update video series! Each month, we’ll share a quick update on the advocacy initiatives we’re focused on, provide insight into the current policy landscape, and highlight ways you can take action and make a difference for the SMA community. Click here to watch our latest video and explore past advocacy updates.
Cure SMA Advocacy Activities
Below please find some advocacy resources for your use and advocacy actions that Cure SMA has taken on behalf of the SMA community.
2026 Advocacy Actions
2025 Advocacy Actions
- 12/03/25: Cure SMA Statement for Congressional Hearing on Importance of Medicaid Caregiving
- 11/18/25: Cure SMA and 50+ Organizations Support Biomedical Research Funding
- 11/13/25: Cure SMA Shares End-of-Year SMA Priorities with Congress
- 11/05/25: Cure SMA Shares SMA Community Perspective on Urgency of Treatment Development and Approval
- 10/23/25: Cure SMA Joins other National Groups in Seeking a Hearing on Disability Education
- 10/22/25: Cure SMA and other National and State Organizations Express Concern about Staff Cuts at Disability Education Agency
- 10/10/25: Cure SMA joins Disability Organizations in Letter to CMS related to Medicaid Work Requirements
- 09/22/25: Cure SMA Supports the Safe Step Act
- 09/10/25: Cure SMA & 190 National Organizations Seek Extension of Key Rare Disease Program
- 09/04/25: Cure SMA urges Congress to Break Down Barriers to Work, Savings & Marriage
- 06/05/25: Cure SMA Shares SMA Community Concerns with Proposed Medicaid Cuts and Changes
- 05/5/25: Cure SMA and other National Organizations Support Existing Transportation Regulations for People with Disabilities
- 05/5/25: Cure SMA and other National Organizations Support Reinstating the Federal NBS Advisory Committee
- 04/24/25: Cure SMA Highlights SMA Research Success and Unmet Needs in Advance of Congressional Hearing
- 03/27/25: Cure SMA Supports Extension of the FDA Rare Disease Priority Review Voucher Program
- 03/24/25: Cure SMA Supports Legislation to Increase the Asset Limit and End the Marriage Penalty in the SSI Program
- 03/10/25: Cure SMA Supports Legislation to Create Tax Credit for Wheelchairs & Other Mobility Devices
- 02/25/25: 50 State SMA Community Support for New Federal SMA Research
- 02/03/25: Cure SMA Supports Legislation to Support Family Caregivers
- 01/21/25: Cure SMA State Sign-on Letters in Support of SMA Research
- 01/21/25: Cure SMA Shares SMA Community Agenda for 2025
- 01/07/25: Cure SMA Releases Legislative Brief on Unmet Research Needs of Military & Veterans Families with SMA
2024 Advocacy Actions
- 12/04/24: Cure SMA and other National Organizations Urge Congress to Incentivize Rare Disease Research and Development
- 09/25/24: Cure SMA Urges Senators to Support Bill to Incentivize Research & Treatment Development into SMA and other Rare Diseases
- 09/17/24: Cure SMA and other Disability Organizations Support Legislation to Increase Information about State Caregiving Options
- 08/21/24: Cure SMA Supports the American Housing and Economic Mobility Act to Improve Access to Accessible Housing
- 08/08/24: Cure SMA Supports Legislation to Promote Savings By Extending ABLE Account Provisions
- 07/11/24: Cure SMA Supports the Creating Hope Reauthorization Act to Spur New SMA Discoveries
- 06/28/24: Cure SMA and Other National Organizations Urge Insurance Coverage of Wheelchair Standing Systems
- 06/26/24: Cure SMA Urges YES Vote on Legislation to Address SMA Community Caregiving Challenge
- 06/21/24: Cure SMA Requests Funding for Airport Accessibility
- 06/17/24: Cure SMA Proposes Policy Change to Promote Work and Financial Independence of People with SMA
- 05/16/24: Cure SMA Supports Action on Bipartisan Rare Disease Legislation
- 05/14/24: Cure SMA Supports Increasing Awareness of Caregiving Services and Disability Programs
- 05/07/24: Cure SMA Seeks Support for HUD 811
- 05/02/24: Cure SMA Supports the Disability Provisions in the FAA Reauthorization
- 04/29/24: Cure SMA Comments on Air Travel with Disabilities Using Wheelchairs
- 04/26/24: Cure SMA Seeks Support for NBS Funding
- 04/10/24: Cure SMA Supports New Legislation to Expand Caregiving Services and Strengthen the Direct Care Workforce
- 04/5/24: Cure SMA Thanks Members of Congress for Supporting Accessible Medical Diagnostic Equipment Proposal
- 02/13/24: Cure SMA Highlights Caregiving Needs of SMA Community for Congressional Hearing
- 02/8/24: Cure SMA Comments on ADA Standards for Transportation Facilities
- 02/7/24: Cure SMA Comments on Accessible Medical Diagnostic Equipment
- 01/29/24: Cure SMA Asks Indiana Officials to Protect Caregiving for Residents with SMA in Waiver Proposal
- 01/10/24: All 50 States Now Screening Newborns for SMA
2023 Advocacy Actions
- 10/12/23: Cure SMA Supports the HCBS Relief Act to Address Caregiving Needs of People with SMA
- 10/11/23: Cure SMA Supports Universal Changing Stations at Airports
- 09/11/23: Cure SMA Supports Legislation to Remove Marriage Penalty in Disabled Adults Child Program
- 07/20/23: Cure SMA Comments on Updates to HUD's Section 504 Regulations
- 07/12/23: Cure SMA Applauds Disability Provisions in Emergency Preparedness Legislation
- 07/10/23: Cure SMA Support Bipartisan Legislation to Increase the Asset Limit in SSI
- 06/16/23: Cure SMA Comments on CMS Rule Aimed at Improving Access to Medicaid Caregiving Services and Direct Care Workers
- 06/14/23: Cure SMA Supports Disability in Senate Aviation Legislation
- 06/12/23: Cure SMA Seeks Stronger Disability Provisions in FAA Reauthorization
- 05/31/23: Cure SMA Highlights Unmet Needs of Individuals with SMA to NIH Advisory Council
- 05/19/23: Cure SMA and Other National Organizations Thanks CMS for Coverage Decision on Seat Elevators in Power Wheelchairs
- 05/10/23:: Cure SMA Support’s the MOBILE Act
- 05/08/23:: Cure SMA Seeks Disability Provisions in Emergency Preparedness Legislation
- 03/23/23: Cure SMA Shares Air Travel Experiences of Passengers with SMA in Congressional Testimony
- 03/17/23: Cure SMA Urges States to Prioritize Medicaid Re-Enrollment and Continuous In-Home Coverage for People with SMA
- 03/13/23: Cure SMA Supports Legislation to Ensure People with SMA Can Access PCAs and Other In-Home Supports
- 02/22/23: Cure SMA Supports Proposal to Expand Insurance Coverage of Seat Elevation Systems in Power Wheelchairs
- 02/17/23: Cure SMA Supports Bipartisan BENEFIT Act to Ensure Patient Perspective in Drug Development and Approval Process
- 02/16/23: Cure SMA Releases Nationwide Report on Air Travel Experiences of Individuals with SMA and their Families
- 02/13/23: Cure SMA Seeks Additional NIH Research into Spinal Muscular Atrophy
- 01/31/23: Cure SMA Supports Legislation to Prohibit Discriminatory Health Care Measures (QALYs) That Devalue People with SMA
- 01/10/23: Cure SMA Supports Legislation to Increase Employment Opportunities for People with SMA and other Disabilities
2022 Advocacy Actions
- 11/17/22: Cure SMA Urges Congress to Address SMA Community Priorities in Final Days of 117th Congress
- 11/17/22: Cure SMA Shares the Air Travel Experience of Passengers with SMA
- 11/01/22: Cure SMA Shares SMA Community Feedback on Seat Dimensions in Aircraft
- 10/04/22: Cure SMA and Other National Organizations Urge HHS to Ensure Accessible Medical Equipment in Healthcare
- 09/12/22: Cure SMA and Other National Organizations Seek Final Action on Federal Newborn Screening Legislation
- 09/07/22: Cure SMA Urges Insurance Coverage of Seat Elevation in Power Wheelchairs
- 07/25/22: Cure SMA Educates Congress on the Progress and State of SMA in Advance of SMA Awareness Month
- 07/11/22: Cure SMA Applauds the U.S. Department of Transportation’s Airline Passengers Bill of Rights
- 06/24/22: Cure SMA Thanks Senators for Commitment to Raise the SSI Asset Limit in 2022
- 06/15/22: Cure SMA seeks Disability Provisions in Retirement Legislation to Promote Savings and Economic Independence for People with SMA
- 05/26/22: Cure SMA Testimony in Support of Continued NIH Research into SMA
- 05/25/22: Cure SMA Responds to Congressional Hearing on the Economic Security Challenges of People with Disabilities
- 05/24/22: Cure SMA & 40+ National Organizations Urge Congress to Allow People to Save More in the SSI Program
- 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
2021 Advocacy Actions
- 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
2020 Advocacy Actions
- 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 Seks Priority Access for COVID-19 Vaccines for SMA Community