Genentech, the SMA community join forces in song, video – The Third M – MM + M

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Hoping to spark a wider conversation about authentic representation in space of people with disabilities, Genentech has partnered with the spinal muscular atrophy community and musician James Ian on “Spaces”. The song and video, which debuted on social media today, were created from start to finish by people with ADS.

The project began during the pandemic, during which Genentech expanded its reach to people with ADS. The effort intensified after the approval in August 2020 by the Food and Drug Administration of the SMA treatment from the company Evrysdi.

“We know the drug is only part of the responsibility we have,” said Michael Dunn, senior director of marketing, rare neurological diseases at Genentech. “Our commitment to the community must go much further than that. “

The key to the project was to present a nuanced view of people with disabilities – not just people with ADS, but one in four people in the United States who Dunn says has some sort of physical or psychological disability.

“Disability is often under-represented or poorly represented in the media,” he explained. “What we heard in our conversations with the community is that people with disabilities are referred to as ‘inspiring’ or ‘courageous’ rather than seen as artists or seen for what they do… We wanted to represent the community in a more thoughtful way. “

For Ian, a 39-year-old man with Type 3 ADS, “Spaces” is kind of a looping moment. A musician and multi-instrumentalist, Ian had to learn to reconcile the demands of his profession with the physical limitations imposed on him by SMA.

“There is so much inaccessibility in the sites,” he said. “Even just to get on stage – the stairs are difficult for me. I had to ask people for help; I had people come to look for me on stage.

Over the past two decades, Ian hasn’t just engineered his share of smart workarounds – “I can’t carry my PA very well, so I would take off my belt, wrap it in the handle of the PA and carry it over my shoulder”, he remembers – but I also forged bonds sustainable with members of the SMA community.

Ian sees “Spaces” as a tribute to these relationships and the inspiration he drew from them. During the creation process, he did everything in his power to make sure the song lived apart from the SMA cause, revising the lyrics over and over again to make sure they were widely applicable. He has also consulted with community leaders to make sure he doesn’t fall for what he calls “inspirational porn”.

“I was getting really picky,” Ian said. “There would be certain sentences where I would say, ‘No way, that word has taken on another meaning. “” I felt a tremendous sense of responsibility to get it right. “

The end product, Ian believes, succeeds on its artistic and creative merits while simultaneously addressing issues of authenticity in portraying people with disabilities.

“I want to bring the people of the SMA community together and show them that they can really make their dreams come true,” he said. “I hope we will be taken seriously and have the opportunities to be successful the way we want to be successful in the areas where we want to be successful. “

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