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Soul Shine 2023 to prioritize fundraising for Team Gleason 

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Janie Bertelson joins Jackie Robin onstage during Soul Shine 2022. Micah, Howie and Andrew Robin add their support. PHOTO BY BELLA BUTLER

Annual event remembers Big Sky’s Mark Robin and Eric Bertelson, both taken by ALS 

By Jack Reaney STAFF WRITER 

Soul Shine will return on June 29, remembering Big Sky’s own Mark Robin and Eric Bertelson and supporting solutions for those living with Amyotrophic Lateral Sclerosis (ALS), sometimes called “Lou Gehrig’s disease.” 

Sharing the stage with the second Music in the Mountains concert, presented by the Hungry Moose Market & Deli, Soul Shine returns with a specific goal: to raise significant funds for Team Gleason, a nonprofit that provides technology, equipment and adventures to families struck by this sudden and unpredictable neuromuscular disease. Team Gleason supported both the Robin and Bertelson families after diagnosis. 

“We would love to take our fundraising for Team Gleason to another level,” Jackie Robin, Mark’s wife, told EBS.  

Mark was a longtime local and co-founder of the Hungry Moose. 

A free carnival followed by a concert—Big Sky’s own Dammit Lauren! will open for Joslyn & the Sweet Compression—Soul Shine will raise money through a raffle. Prizes include a hot air balloon ride for four, donated by Big Sky Build—owner John Seelye was a great friend of Mark’s—two separate GoPro cameras with complete accessories donated by the Woodman family, and one free drink per day for a year from BYWOM. 

“This year instead of just asking people to make a donation, we wanted to offer the chance to win some great prizes. It’s more fun,” Jackie said. The raffle is new for Soul Shine 2023.  

Supporters at Soul Shine 2022. PHOTO BY BELLA BUTLER

Raffle tickets will be sold in-person at the event, which begins at 6 p.m. with the traditional carnival. This year’s carnival costs have been covered by Lone Mountain Land Company to help maximize the Soul Shine fundraiser for Team Gleason. 

A resilient leader 

The nonprofit was created by Steve Gleason, a former New Orleans Saints safety who sprung into fame in 2006 with a punt block which symbolized the resilience and “absolute rebirth” of New Orleans in the opening minutes of the Saints’ return home after Hurricane Katrina.  

Diagnosed with ALS in 2011, Gleason’s decade-plus survival shows his own resilience. His organization, Team Gleason, has supported more than 30,000 people living with ALS, leveraging $20 million to provide technology and equipment, care services, and family adventure trips to help those with ALS make the most of it.  

At the Moose every day for 25 years, Jackie said everybody knew Mark. He had a very distinct, New Yorker personality, she said. He cared about every customer. Nicknamed “Marky Moose,” he and his family connected with Team Gleason after his diagnosis in 2016.  

When Mark lost control of his voice and hands, he used speech technology which he controlled using his eyes, technology that Team Gleason helped the Robins find and fund.  

“They help you with technology, they help you with independent living, they help you with planning an adventure,” Jackie said. “They are there for a family when they’re diagnosed… Nobody does for you what Gleason does for you. They get it, and they understand.” 

Mark and his three sons at the first Soul Shine. PHOTO BY KENE SPERRY

She said Steve Gleason keeps the vibe high as the leader of the organization. His focus is living with ALS, not dying from it.  

“The big thing for Gleason is living fully and independently for as long as you can,” Jackie said. “And joyfully.” 

Team Gleason’s support isn’t just for the patient, but also for caregivers.  

“When ALS hits you, you have to get ramps, [get] a van, [change] the inside of your house, [alter] your shower [alter] your door to get outside, and [move] downstairs to the main level. The number of things you have to do to modify your life… It’s unfathomable,” Jackie said.  

The first Soul Shine was hosted in June 2017, and Mark gave a speech using his eye-controlled speech software. He transcribed the speech in a blog post

“Welcome to Soul Shine. Thank you for being here. I’m so happy that you all could make it, it means so much to me. It is such a beautiful day. I hope everybody is having a good time. I am living every day to the fullest and I hope you are too. That’s why we are here, to help each other, have fun with each other, enjoy each other, to have joy with one another. Life is too short. Let’s party!” 

The audience was shouting in support, he recalled, and it was a five-hour party. Mark continued blogging throughout his ailment. It wouldn’t have been possible without specialized communication technology. 

“Mark was a writer,” Jackie said. “The blog was very helpful to the community locally, but also our friends and family all over the world.” 

This plaque beside “The Sanctuary” in Fire Pit Park shows the first blog post Mark wrote after his diagnosis. PHOTO BY JACK REANEY

Mark passed away in December of that year. Beyond the memories of family and friends, Mark’s legacy survives in the world of Big Sky during Soul Shine, a tradition for which the Robin family is grateful.  

Two cases too many for a small town 

The event got its name from then-7-year-old Maeve McRae, who wrote a card to Marky Moose, which read: “you have Soul Shine. I love you.”   

After two Soul Shines celebrating Mark and bringing ALS to the front of local minds, another Big Sky community member was diagnosed. Eric Bertelson, a lifelong athlete and outdoorsman who came to Big Sky in 2017, was diagnosed in May of 2019. 

Eric Bertelson and his three sons. COURTESY OF JANIE BERTELSON

When the Robins learned of Eric’s diagnosis, Jackie put the Bertelson family in touch with Team Gleason.  

EBS sat down with Eric’s wife, Janie Bertelson, and her sister Emily Potts. They shared memories of Eric: the father of three boys who put family first, an avid golfer and skier, and a man who kept a positive attitude from diagnosis through the final months of life.  

“He was just a happy guy who was up for anything,” Janie said. “And I think the reason Team Gleason was so important is [they] allow people with ALS to keep living their best life despite the diagnosis.”  

Janie remembers that within a week of contacting Team Gleason, the organization sent ramps, a collapsible portable power chair, a microphone to record his voice, and shared every contact needed for ALS support and services. 

The Bertelsons also invested in an all-terrain vehicle to help Eric get around Big Sky. COURTESY OF JANIE BERTELSON

Every case is different. Eric never lost his voice, allowing him to communicate his struggles as he lost mobility. The family decided to get him a feeding tube, which Janie says prolonged his life another year beyond January 2021. 

Potts pointed out that in remote communities like Big Sky, the cost and difficulty of living with ALS are much higher. But for Janie and her family, Team Gleason was a sounding board. The organization is based on Gleason’s first-hand experience with a disease that brings far more questions than answers.  

“I feel like Team Gleason is huge for that reason too. It helped bring some connectivity,” Potts said. 

Janie is especially grateful for the community’s unconditional support to her family that was new to town. 

She’s excited for Soul Shine 2023 “as a way to promote fundraising for Team Gleason, but also to thank the community for everything they’ve done for the Robin family, for my family. For such a small town, such a small community to have been hit with this horrific disease twice in a short period of time is somewhat unique. And this town rose to the occasion. It means a lot, and the community should be proud,” Janie said.  

Five months after Eric’s passing, Janie attended Soul Shine 2022. She said it was difficult, but everyone she saw was amazing and the event created a rare opportunity to educate people—community members, summer visitors, friends, concert lovers—about ALS, which she feels is a misunderstood disease.  

At Soul Shine, Mark and Eric are remembered for their great attitudes, Janie said. Like Steve Gleason, they focused on living. Janie said Gleason’s organization is amazing.  

“That’s what they focus on. They’re not trying to cure you. They know the end is in sight. And they help you make the most of it,” Janie said.  

“Live while you can. And make the most of it.”  

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