The story

The story of the Max Brault SMA Foundation began several decades ago when—at the age of 16—Max was given a choice. For most of his life, he had been slowly adapting to physical challenges. He progressed more slowly than his peers—crawling, walking, riding a bike with training wheels, and so on. His parents were told that he might have one of several possible conditions, but the only way to confirm a diagnosis was through a biopsy.

When Max turned 16, his parents felt it was time for him to make that decision. He agreed because he didn’t want to go through life without knowing, or without a plan for how to move forward.

The biopsy results revealed that Max has Type 3 Spinal Muscular Atrophy (SMA), a rare disorder. At the time—before the internet—there was little to no information available to Max or his family. The advice the family received was to put Max in a wheelchair and limit social and physical activities. Decades later, we now know that this approach does more harm than good.

Fast-forward to today—Max is a successful businessman in his mid-fifties. He always told himself that once he achieved a certain salary level he would establish a foundation with charitable status. His goal is to raise funds for SMA research and expand understanding of this disorder. More importantly, Max wants to ensure that individuals and families newly diagnosed with SMA have access to accurate, up-to-date information. He aims to push the research industry to develop better treatments and long-term strategies for living with SMA—rather than accepting the outdated mindset of simply "staying home in a wheelchair and watching TV."