“I have observed this charity grow since it’s inception. The charity remains true to its objective of supporting patients and families living with this dreadful disease, through support groups, loaner equipment through the loaner closet program, networking on social media to connect families sharing their experiences across the world. This disease does not have a marathon or a 5k run in its name; the charity uses an intriguing device: a shoe as a symbolic marathon to spread awareness among lay public about this devastating disease. “