SMA Columns

Surgery and a feeding tube helped me rebound from weight loss that was affecting my breathing. Could better communication between my care team members have helped me avoid the feeding tube altogether?  Often, when I tell people I have spinal muscular atrophy (SMA), they’ve never heard of it, whether they’re health care professionals or not.…

For many Americans with rare diseases, they live in a far-off town at the boundaries of a city’s edge. Towns where few families live, and where most likely those same families are the ones they’ve known their whole life. There’s only a handful of doctors caring for the town’s populace, and chances are, there isn’t…