Genentech Fashion Show Puts SMA on the Runway

As part of its ongoing efforts to support and engage with the spinal muscular atrophy (SMA) community, Genentech hosted the first-ever SMA fashion show in New York on Thursday. The event, Double Take, featured people wearing adapted fashion designed to fit their body types and disabilities.

Michael Dunn, senior director of rare neurological disease marketing at Genentech, noted that Double Take was created in collaboration with the SMA community.

“The importance for us is partnering with the SMA community and ensuring that there is visibility of disability in fashion and other industries,” he said.

IMAXTree photos for Genentech.

The participants, all of whom have some form of AME, participated in the conception of the event and the clothing designs. They both walked and rolled down the runway.

That’s part of why the name Double Take has so much resonance, Dunn explained.

“We want society to do a double take on people for the right reasons, not the wrong reasons,” he said. “We want them to do a double take because of the style, fashion and self-expression that comes with different types of adaptive clothing, rather than a double take because the individual has a disability.”

IMAXTree photos for Genentech.

Models, actresses, musicians, students and writers were among the 11 participants in the show. They included James Ian, a singer-songwriter who has collaborated with Genentech on previous initiatives, as well as artist Scott Menzel and fashion entrepreneur Laura Watson. Shane and Hannah Burcaw, a husband and wife team who run a popular YouTube account chronicling Shane’s life with SMA, also appeared on the runway.

Sawsan Zakaria, a model and disability rights advocate, noted that most of the planning for the event took place on Zoom. After her appearance on Thursday, she described the show as “amazing.”

“I didn’t get to see everyone’s outfits until this morning,” Zakaria said. “Just being able to put faces to names and then see everyone was magical.”

IMAXTree photos for Genentech.

Ian, whose song “Spaces” is meant to empower people living with disabilities, noted that art can help raise the visibility of disability.

“Disability is part of humanity and art often reflects humanity,” Ian said during a question-and-answer session after the fashion show. “So when disability is left out of music or film or television, you’re essentially not talking about a part of humanity. Art, fashion and all of those things help drive social change.”

Zakaria, for her part, hopes that Double Take will raise awareness among the general population about the challenges related to inaccessibility.

IMAXTree photos for Genentech.

“It will start with fashion, on the runway today,” Zakaria said. “But it’s more than fashion: it’s the stores, it’s the workforce…all of these things are still inaccessible to people with disabilities. Double Take will start the conversation.”

The fashion show is part of Genentech’s larger overall initiative, SMA My Way, which aims to connect members of the SMA community.

“We want to inspire and educate people without disabilities, as well as fashion designers and other [artists] that the pharmaceutical industry doesn’t normally get involved,” Dunn said. “It all goes back to how we see our role in drug manufacturing — that’s just one part of what we do, and the other part is to engage and better represent people with disabilities.”