“One of the joys of music is the extraordinary people it brings into our lives….”

That was how we began a blog post last April about our friend Jeremy Waggoner, who lived for 29 years with the debilitating genetic disorder Spinal Muscular Atrophy. We got to know Jeremy and his family through our performances at the Texas Jazz Festival and followed their journey over the years. His songwriting and poetry—and his family’s love and dedication to ensuring that he lived the fullest life possible—showed us the best of being human.

In the normal course of our lives, we came to know others struggling with the same condition: the sweet-spirited son, now deceased, of a talented musician; a Facebook friend and tireless activist, now in her 50s, whose sense of humor and fighting spirit constantly inspire us.

Jeremy wrote about the frustration of being an intelligent, creative, and sociable individual living in a body in which disease ...