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
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 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].
Why Is Advocacy Important?
Advocacy Do It Yourself (DIY)
Learn how to advocate with Members of Congress more effectively on issues important to you and the SMA community in Cure SMA’s new Advocacy DIY video series.
In this Cure SMA video, you will learn how to sign up to be a Cure SMA Advocate and take your first advocacy action!
Narrated by Jim Willison
In this short video, Cure SMA Advocacy will provide a short overview of Congress and walk you through Cure SMA’s online advocacy tool to help you identify and communicate with your own Members of Congress.
To become a Cure SMA Advocate, go to the Cure SMA Action Center.
Narrated by Jim Willison
In this video, Cure SMA Advocacy will share the 5 basic elements of a congressional meeting, and we will share two post-meeting tips that are often forgotten, but super important.
To become a Cure SMA Advocate, go to the Cure SMA Action Center
Narrated by Jim Willison
In this video, Cure SMA Advocacy will take you inside a typical Washington DC congressional office to explain key staff positions, their roles inside that office, and how you, as a Cure SMA advocate, can work with congressional staff to educate and advocate in support of SMA community priorities.
To become a Cure SMA Advocate, go to the Cure SMA Action Center
Narrated by Jim Willison
In this video, Cure SMA Advocacy will discuss the role of committees, highlight leadership positions within committees, and identify committees that matter most to the SMA community.
To become a Cure SMA Advocate, go to the Cure SMA Action Center
Narrated by Jim Willison
In this video, Cure SMA Advocacy will walk you through the steps for requesting a congressional meeting and share tips for running an effective meeting.
To become a Cure SMA Advocate, go to the Cure SMA Action Center
Narrated by Jim Willison
SMA Advocacy Issues Toolkit
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 toolkit below to help anyone advocating for these important issues during the 118th Congress. Click on the images below for 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 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.
- 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
- 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
- 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 Seks Priority Access for COVID-19 Vaccines for SMA Community
Find Your State Fact Sheet
Our state fact sheets include information about SMA and its prevalence in your state as well as updates on treatments, care centers, and volunteer chapters. Hover over the map to find your state fact sheet.