“The disease is dark, but the outpouring of love and support for our family has been nothing but light-filled. We are overwhelmed.”
In December 2017, we lost our beloved Mark Robin to Amytrophic Lateral Sclerosis (ALS), also known as Lou Gherig’s disease. During their journey, the Robin family, along with their close friends, family and the community of Big Sky, learned first hand the devastating effects of this disease on a previously very healthy individual. The inspiration for the name Soul Shine came from one of many hand made cards Mark received from local kids who knew him as Marky Moose. It read: “You have Soul Shine. I love you.”
This year all donations will support Team Gleason which focuses on technology, travel and quality of life for those living with ALS.
Team Gleason is focused on improving the quality of life for those living with ALS. Steve Gleason is a former New Orleans Saints football player who was diagnosed with the disease in 2011. His accomplishments in improving technology and access to technology for People with ALS (PALS) as well as providing inspiration and funding for adventure and travel for PALS and their families are enormous. Steve was recently awarded the Congressional Medal of Honor for his achievements. He and his wife, Michel, along with their eight year old son, Rivers welcomed a baby daughter last October. Team Gleason actively supported and helped our family during Mark’s illness. We love what they do and strongly encourage support of this extremely worthwhile organization.
Mark was diagnosed with ALS in September, 2016. As a lifelong writer, he chose to resurrect a blog he began in 2009. His sixteen-month journey with an extremely aggressive form of the disease is chronicled in poetic detail. Within 10 months of diagnosis, Mark lost his ability to speak but an eye gaze computer and support from friends, family and Team Gleason allowed him to continue to communicate.