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Genentech’s spinal muscular atrophy song played at Special Olympics Florida closing ceremony

Genentech’s campaign song by James Ian, which debuted last November, played at the Olympics closing ceremony this month because of the song’s message of inclusivity.

The 39-year-old singer/songwriter has spinal muscular atrophy (SMA), and the song was part of a broad campaign from the Roche biotech unit, which markets SMA drug Evrysdi.

The thought behind the campaign? People with disabilities can be found in all of the same spaces as nondisabled people. But Ian wants to make sure the world knows they’re doing lots more than occupying space.

The original video for that song has currently seen 800,000 views across 50 countries, according to Michael Dunn, senior director of marketing at Genentech. And on June 11, it went up another level when Ian performed “Spaces” live at the Special Olympics Florida closing ceremony.

More than 500 athletes and Unified partners competed in 19 sports at the 2022 Special Olympics USA Games, which ran June 6-11.

Dunn explained in an interview with Fierce Pharma Marketing that Ian’s song goes beyond SMA; Genentech said this song and campaign wasn’t about plugging Evrysdi, either directly or indirectly, but about giving control and representation to a community that can too often be overlooked.

“Genentech made the decision to relinquish control and allow the community to influence and dictate what they wanted to talk about,” Dunn said.

“That’s because disabled individuals are not represented well in the media but with at least one in four people in the U.S. with some form of disability, this representation is really important, and that’s why we took this approach.”

That’s also why the company let the SMA community decide the “what and how of ‘Spaces,’” he explained.

Ian was appointed by the disabled athletes’ community to perform the song in Florida over the weekend, Dunn said, and it became the “pinnacle moment” for the song, Ian and the campaign.

Genentech said that, from an awareness standpoint, the goal of the campaign is to “create something for the disabled community more than trying to bring awareness to Genentech or to SMA,” when assessing how the company is measuring the success of Spaces.

“We really wanted to help create something for the disabled community by the disabled community,” and he says the numbers for the original video and the closing ceremony show up how successful it has been.

Genentech’s Evrysdi became the newest drug to enter the SMA space after winning FDA approval in August 2020 for patients 2 months and older. It competes against Biogen’s Spinraza and Novartis’ gene therapy Zolgensma and made 602 million Swiss francs ($578 million) in 2021. It also added a new FDA label last month for babies under two months old.