For columnist Alyssa Silva, control has always been her safety net. But in reality, it doesn't protect her; it exhausts her.

A study found mutations that cause SMA may trigger problems with bone cell communication, suggesting a potential new way to ...

Columnist Sherry Toh can't fathom generative AI replacing human empathy when it comes to caregiving for people with rare diseases.

Most children SMA type 1 can survive an episode of pARDS, a life-threatening respiratory failure, under standard protocols, ...

Home healthcare requires adaptability, writes columnist Ari Anderson, who has relied on home health nurses for decades.

When columnist Connie Chandler tackles an art project, it becomes a creative collaboration thanks to her supportive team of ...

SMA patients may have subtle abnormalities in eye movements, likely caused by changes in the brain rather than muscle ...

The change of seasons brings colder weather, meaning columnist Connie Chandler must seek to adapt to her changing physical ...

Being a wheelchair user has its drawbacks, says columnist Kevin Schaefer, but he's also found many benefits to having a ...

Columnist Helen Baldwin describes how Halloween lost its mojo for her after her baby boy was diagnosed with SMA in 1997.

One night, I was woken by a beeping noise. That’s not altogether unusual, because alarms from my medical equipment occasionally sound throughout the night. I’m so accustomed to it that my mind ...