Fundraiser for ALS will host first stand-alone event as nonprofit on Saturday
By Jen Clancey DIGITAL PRODUCER
BIG SKY—The Big Sky Country Fair is back—this time with a new mission. Big Sky Soul Shine, an event in memory of two community members who passed away from Amyotrophic Lateral Sclerosis, will return this year in the form of a country fair at Len Hill Park on Saturday, July 13.
As a new nonprofit, Big Sky Soul Shine will celebrate its first freestanding event this year by raising funds for Team Gleason, an organization that supports individuals with ALS and their families, and support for a community member diagnosed with ALS in 2023.
Soul Shine organizers met Patrick Shaw at last year’s event, which coincided with Music in the Mountains. Shaw attended the concert with the purpose of enjoying live music but later introduced himself to organizers after learning that the concert supported individuals and families with ALS. The 29-year-old Island Park, Idaho resident had been diagnosed with ALS earlier in 2023.
ALS is a fatal nervous system disease that affects nerve cells in the brain and spinal cord and there is no known cause, relief of symptoms, or cure. A portion of the proceeds raised this year will support him as he and his family navigate ALS.
“We want to raise awareness for [ALS] … And we also want to raise funds to help other people that are going through it,” said Jackie Robin, president of the Soul Shine organization. Robin lost her husband, Mark, a prominent community member and familiar face at the Hungry Moose Market & Deli, to ALS in 2017. “But in addition, we’re all about Big Sky and all the support that they gave our families, so this is also Big Sky Soul Shine saying, ‘Okay, we’re going to take on bringing back organizing the Big Sky Country Fair.’”
In the past, Soul Shine has operated alongside a Music in the Mountains concert, but for 2024, Soul Shine will have a full day of stand-alone programming with the help of the Hungry Moose, Big Sky Community Organization, and other local nonprofits that have offered resources and volunteers.
“BSCO is honored to be a part of Big Sky Soul Shine,” said BSCO Director of Operations Madeleine Feher. “As you know, on June 28, we lost Marty Pavelich to ALS … [ALS] has affected the community in so many profound ways.”
Saturday’s events will begin with a friendly game of pickleball at Big Sky Community Park. The $50 registration opens at 8 a.m. and round robin play will commence from 9 a.m. to 1 p.m. Snacks, drinks, a T-shirt, and sunglasses are included for participants.
Pickleball volleys will end just in time for the country fair in Len Hill Park. BSCO donated the park and stage to the event so that the green space could be transformed into a celebration with live music, carnival games, inflatable bouncy houses, a hot dog and hamburger stand along with other food and beverage options, including beer from Beehive Basin Brewery, and margaritas from Alberto’s Mexican Cuisine. Vendors will donate a portion of profits toward Soul Shine.
“The kids will have unlimited access to inflatables, we’ve got carnival games, we’ve got face painting, we’ve got a glitter booth,” Robin said. To participate in the fair activities, wristbands are $25 per person, but anyone can enter the area, enjoy live music and purchase food and beverage without a wristband.
Lauren Jackson, treasurer of Soul Shine, has organized musical acts and is excited to perform with her own band, Dammit Lauren!, at the event, a yearly tradition for her. They’ll play alongside a new Big Sky band, Daddyz Gurl, and have local and regional artists, Kevin Fabozzi and Lone Elder, perform for a total of four acts of live music throughout the fair.
Last year, Soul Shine raised $25,000. Organizers plan for this year’s funds to support the Shaw family, Team Gleason and bolster Soul Shine as a newly established nonprofit.
Remembering legacy of community members lost to ALS
Soul Shine found its name in 2017 after the Robins read a note from a young community member that read, “You have soul shine. I love you,” at their kitchen table with Tracy Jacobson, the Hungry Moose’s first employee and a close friend of the family. The letter was addressed to Mark Robin, Jackie’s husband, who had been diagnosed with ALS in 2016.
At the time, Mark was using an eye gaze computer to communicate, and Jocobson remembered the lightbulb moment that went off for Mark. The small organizing team decided on the name “Soul Shine” for the 2017 event, an extension of gratitude from the Hungry Moose’s 20th anniversary celebration they had hosted three years prior as the shop’s owners.
The event included a carnival ahead of a Music in the Mountains concert, and raised funds for Team Gleason. Mark and Jackie Robin moved to Big Sky in 1993 where they opened a vegetable stand, which, in 1994, grew into the hub for casual eats, Hungry Moose Market & Deli.
Mark passed away from ALS in December 2017, 16 months after his diagnosis.
Jacobson, a Big Sky local and now the secretary of Soul Shine, remembers Mark’s generosity. “He was probably one of the most philanthropic, generous people I have ever known,” Jacobson said, recalling Mark giving children Swedish Fish when they came to visit the Hungry Moose. “My children still call him Uncle Marky Moose.”
Two years later, another Big Sky community member was diagnosed with ALS. Eric Bertelson moved to Big Sky in 2017 and was diagnosed with ALS in 2019. A father to three sons and married to Janie Bertelson, the family connected with Soul Shine and learned about Team Gleason, which immediately offered resources. Bertelson passed away in 2022 from the disease.
Jackie and her three sons feel grateful for the continued support and enthusiasm for Soul Shine from Big Sky.
“It feels really great to continue to work with the community after losing Mark … It feels good to continue to collaborate,” she said. She added that keeping the energy and positivity high is as important as supporting those who are going through what her family went through.
“They were more than humans—they were great fathers, spouses, and members of the community,” Jacobson added. As the organizer of past events and this year’s country fair, she hopes that all feel welcome to join the celebration and that the joy and celebration at Soul Shine will honor the legacy of community members lost to the disease.
“That space is for everybody to just have that sense of community, to be together and support [each other] all while having fun,” Jacobson said.
