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 Urges Congress to Finalize SMA Community Priorities

10/23/25: Cure SMA Joins other National Groups in Seeking a Hearing on Disability Education

10/14/25: Cure SMA and other National & 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

05/05/25: Cure SMA and other National Organizations Support Existing Transportation Regulations for People with Disabilities

05/05/25: 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

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

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 Supports 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

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

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

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

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

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

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

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