2024 soul shine
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“The disease is dark, but the outpouring of love and support for our family has been nothing but light-filled. We are overwhelmed.”
Jackie Robin
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 event is held in memory of Mark Robin and Eric Bertelson, another Big Sky community member who passed away from the disease in 2022. This year Big Sky Soul Shine would like to introduce Patrick Shaw, a young man we met at Soul Shine 2023 who is navigating the effects of ALS with the support of his family, friends and community in nearby Island Park, Idaho. Your contributions to Big Sky Soul Shine will help support Patrick as well as many others through our partnership with Team Gleason.
WE THANK YOU FOR YOUR SUPPORT!
a Big sky country fair
BIG SKY PICKLEBALL FUN!
2pm - 7pm carnival fun & live music
food, drink, games, face painting, activities, INFLATABLEs, dunk tank, raffle, prizes, music, dancing and more!
We met Patrick Shaw, a young man from Island Park, Idaho who had been recently diagnosed with ALS at Soul Shine 2023. This year, a portion of the funds raised at SOUL SHINE 2024 will help Patrick and his family as they continue to navigate the affects of ALS.
THANK YOU FOR YOUR SUPPORT!
Mark's Blog
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.
we remember eric bertelson with love
Eric Bertelson and his family faced the challenges of ALS with courage, resiliency and love. The brutal, unforgiving disease of ALS took this funny, loving husband and father away from his family way too soon. Big Sky Soul Shine is a chance for the Big Sky community to wrap a huge hug around Janie and the boys and to remember Eric and all that he meant to so many. Eric loved a good party and will be dancing along with us all at Big Sky Soul Shine ‘24!
A HUGE THANK YOU TO ALL OF OUR EVENT SPONSORS!
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.
Some friends we made and remember with love
Sarah Coglianese Scott Matzka Kit Watson Bob schoeni
We never met Sarah but felt like we knew her from her open, honest, funny blog chronicling her 6 year journey with ALS. She passed away at the age of 40 in November of 2018. Read her blog and feel connected to this incredible family. We think Mark and Sarah are running in the same heavenly circles enjoying plenty of afterlife wine together. Learn more about Sarah and her efforts to help fund research to find a cure for ALS on our Take Action page.
Scott Matzka, former professional hockey player and a friend of Mark’s brother-in-law, created the foundation My Turn to raise awareness and funds for ALS support and research. He and his family also approached their experience with ALS with openness, sharing and a commitment to living life fully. Scott passed away at the age of 40 in December 2018 shortly after a film about his life was released.
Kit Watson was a part-time resident of Big Sky who found extreme joy in life and who fought her battle with ALS with dignity and grace. Her daughter and family live full time in BIg Sky. Kit and her family participated in fundraising events throughout Kit’s illness. Team Big Sky raised over $25,000 for ALS TDI in 2017. Mark and Kit enjoyed meeting at The Big Sky’s Farmer’s Market. Kit passed away in the fall of 2018.
University of Michigan professor, Bob Schoeni lived with ALS in his hometown of Ann Arbor, MI for about 13 years. When Mark was diagnosed, Bob and his wife, Gretchen shared a number of resources with the Robin Family. Bob lived a full, productive, independent life with ALS for as long as he could. His friends and community were inspired to create an organization to support efforts at finding a cure. Visit Ann Arbor Against ALS to learn more.