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.

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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

Transportation

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

Disability rights

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

Education

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

Caregiving

Advocacy Update Series

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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.

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