Author Archives: Helen Baldwin

Pondering the ‘what ifs’ in life with rare disease

I spent a small fortune on cute books for the kindergarteners I taught at Brockman School, then a self-contained public school in Columbia, South Carolina. The students, many with severe disabilities, delighted in hearing the animated voices of the stories I read to them. My own…

Why I don’t share the ‘F-bomb SMA’ attitude

For years, slogans with the “F-bomb” (for a certain expletive) have expressed utter contempt for catastrophic diseases, social injustices, or whatever else riles folks up. The first such campaign I remember was about cancer. I certainly didn’t disagree with the desire to eliminate the ravages of the disease, but…

Enjoying the Cure SMA conference without attending

Somehow we’re fast approaching June’s final days! As summer continues, plenty of memories dance in my head. Particularly eventful, to put it mildly, was 1997. Our summer that year commenced in mid-May, when our third baby, Jeffrey, arrived two weeks ahead of schedule. As my volunteering stints in the…