The recently enacted Consolidated Appropriations Act of 2026 includes several important priorities for the SMA community. They include:Designating SMA as a priority research topic, making it eligible for funding within a key federal research program;Extending the FDA's...

Decisions about SMA treatment should be made solely by individuals with SMA and their family, in consultation with their healthcare providers. Unfortunately, some health insurance plans include barriers, such as prior authorizations or step therapy (also known as step...

Many individuals with SMA and other disabilities rely on the Supplemental Security Income (SSI) Program to meet their basic living needs such as food, clothing, and shelter. In many states, individuals enrolled in SSI are also automatically eligible for Medicaid and its...

Due to irreversible SMA-related symptoms, individuals with spinal muscular atrophy (SMA) face chronic challenges that complicate their health and limit independence and community participation. People with SMA and their caregivers are seeking new treatments that can...

Many individuals with disabilities, including those living with SMA, struggle to find accessible housing that they can afford. While there are public accessible housing programs, there is often insufficient supply of rental vouchers. Working adults with SMA and other...

Natural disasters such as hurricanes, fires, tornadoes, and floods are increasingly disrupting the lives and livelihoods of Americans. A short- or long-term out-of-state relocation due to a natural disaster or other emergency can create unique challenges for...