Federal research is critical to addressing the unmet needs of people living with spinal muscular atrophy (SMA) — particularly older children and adults who lost significant muscle strength and motor function before accessing an existing treatment. New research...

Many individuals with spinal muscular atrophy (SMA) and their families rely on Medicaid-funded home care to maintain their health, independence, and ability to live in and contribute to their communities. This includes home and community-based services provided through...

This week, a group of adults with spinal muscular atrophy (SMA) came to Washington, DC to raise awareness about the unmet health and everyday living needs of people with SMA. They advocated on Capitol Hill for federal SMA research, Medicaid home care services, and...

Power wheelchairs are essential for many people with spinal muscular atrophy (SMA). As one adult with SMA said, “Wheelchairs are our legs. Wheelchairs are a lifeline. Wheelchairs are independence.”However, many individuals with SMA face lengthy delays and other...

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...

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...

For people living with SMA, accessible transportation is not a convenience — it is the infrastructure of independence. It is how people get to medical care, maintain employment, and participate in their communities. Congress must take further action to break down barriers...