Fashion is not generally known for its inclusivity, but all that changed with the Double Take fashion show, part of Roche Genentech’s "SMA My Way" program, where participants with the muscle-wasting disease walked and rolled down the runway in fashions adapted especially for them.
The first of its kind runway show took place Sept. 8 as a prelude to the start of New York Fashion Week. Genentech partnered with Open Style Lab, a nonprofit organization that creates functional yet stylish solutions for and with disabled people. Spinal muscular atrophy (SMA) is a rare, progressive neuromuscular disease, and many who have it will be of short stature and/or in a wheelchair.
The idea for the show came from within the community itself.
“It was an amazing endeavor to open our eyes and really learn how important these types of endeavors are to bring more awareness to what fashion can mean for individuals and how can it really truly impact their self esteem,” Michael Dunn, senior marketing director of neurological rare diseases at Genentech, said.
“One big learning which is how many hacks these participants have to do to their own clothes because they're not able to find clothing that really is suited for them that is stylish and fashionable. What I mean by that is individuals that have limited dexterity may have trouble fastening a button, so creating a button-down shirt and replacing the buttons with magnets can be much more usable … adapting for a wheelchair or if you have limited strength, heavy outerwear is difficult. Those are the types of kind of adaptations that we still hope to see as we move forward.”
First up walking the runway was singer-songwriter James Ian, who co-wrote and performed the song, “Spaces,” which celebrates those with disabilities. Also taking the stage were internet celebrities Shane Burcaw and Hannah Aylward, who have aYouTube channel about their life as an interabled couple. In all, 15 participants—11 of whom have SMA and their caregivers or advocates— walked or rolled down the runway in some amazing outfits.
“The main idea behind the title Double Take is truly just that—individuals might be doing double takes for the wrong reasons, but we want them to be doing them for the right reasons. A double take for the fashion, for the style, for the individualistic nature of these participants, and that's what we want people to really take away from it and ultimately be inspired.”
Genentech’s oral med Evrysdi joined the SMA space in August 2020 for patients 2 months and older. In July, the drug was expanded to include babies under 2 months old. Evrysdi cleared 602 million Swiss francs ($578 million) in 2021.
Competition includes Biogen’s Spinraza and Novartis’ gene therapy Zolgensma. However, Zolgensma has had some trouble of late, with two recent deaths due to liver failure raising some safety questions for the therapy.