Musical group tours through Alaska to share a dying man's musical dream

A heartwarming story that is quickly becoming a national sensation shared its positive notes right here in Alaska.

A band called Bernie and the Believers formed from a man’s dream to create music, and his determination to pursue that dream after being diagnosed with bulbar-onset ALS, or Lou Gehrig’s Disease. The crippling neurodegenerative disease left Bernie Dalton voiceless, unable to sing or play instruments – but he could still write songs.

The group recorded and filmed a music video in Bernie's hospital room in Santa Cruz, CA. The song, called “Unusual Boy,” was one of the group's first singles. It was written by Bernie and dedicated to his vocal instructor Essence Goldman.

In the video, the band sets up to play around Bernie’s bed. He’s dressed in a black bow-tie. Essence sits at his side and sings to life the culmination of their work together. She gently touches Bernie's face, and his mouth trembles as he begins to cry.

The touching video gained traction when NPR’s Tiny Desk Contest picked it up and invited Bernie and the Believers to

www.npr.org/2018/11/02/663422289/bernie-and-the-believers-feat-essence-tiny-desk-concert”>play at their headquarters in Washington D.C. in Nov. 2018.

An Alaska man happened to catch that D.C. concert – it was Joseph Rizzo, the director for the Alaska Children’s Institute for the Performing Arts and president of the Triumvirate Theatre in Nikiski.

“I was actually ironing my clothes, getting ready for school the next day, and the Tiny Desk concert came on.” Rizzo said he was so moved by listening to the music and the story behind it that he resolved to bring the group to Alaska.

“Within about five minutes of watching, I was in tears,” Rizzo said. “I sent Essence an email, and suggested her coming up here to do a tour in hopes that we could raise a little money for Bernie’s daughter so she could go to college.”

Rizzo applied for a Harper Arts Touring Grant through the Alaska State Council on the Arts, which he said paid for 75 percent of the cost to bring Bernie and the Believers to Alaska. Rizzo’s organization came up with the remaining 25 percent using proceeds from the concert in Nikiski.

“It seemed like a really good fit to me, because my experience living in Alaska over the last 30 years is we help each other,” Rizzo said. “And that’s what this is.”

The group toured in Nikiski, Homer, Palmer, and played their last show in Anchorage at Williwaw Social on Saturday evening. Channel 2 caught up with Essence, a successful singer and songwriter of 20 years, before the show.

She shared a history of how she met Bernie in January 2016. She was a single mother going through a divorce; she had just returned from a road tour promoting her album “Black Wings.”

“I had to find a way to support myself and my kids, so I posted an ad on Craigslist offering voice lessons,” Essence said, “and Bernie Dalton was one of the first people to respond.”

Bernie lost his voice two months into their lessons. Once he was diagnosed with ALS and received a prognosis of around three years to live, he put pen to paper and started writing songs that would eventually culminate in his life’s dream of recording an album.

“It was time to get my butt in gear,” Bernie said in an interview with Extrordinaire Media Group. “I could no longer speak or sing, so I asked my singing teacher Essence to become my voice.”

And so she has. Essence says the band has raised nearly $150,000 for Bernie’s family through touring and advocating. Much of that money is going to his medical expenses, which Essence says are not entirely covered by his insurance.

The band's Alaska tour, however, raised money exclusively for Bernie’s daughter Nicole, who Essence says is currently interning at Stanford University where her mother works, while processing the reality of losing her father.

Follow this

to learn more about Bernie and the Believers. Anyone who wishes to contribute to his ongoing healthcare expenses may donate

. The funds will be used to transition Bernie from the hospital home to spend his remaining time with family, according to the page.

Essence says the group is in the final stages of signing onto a Hollywood feature film.

"We're selling the rights to our life story, and someone's making a film about Bernie and the Believers," she said.

And as one final parting note, Essence professed her quickly-formed love for Alaska, and her intention to return one day soon. "We have fallen in love with Alaska. We want to come back," she said. "We've been very welcomed and we feel very embraced, and it's been amazing, honestly."