Open Style Lab plans a double-take fashion show for the SMA community

To highlight the need for adaptive fashion design, the spinal muscular atrophy community has partnered with the nonprofit Open Style Lab to develop a runway show called Double Take. The show will take place on September 8 at 10 a.m. at 608 Fifth Avenue in New York City.

SMA is a progressive neuromuscular disease that can impair walking, dexterity, and overall strength, making clothing with certain fasteners, cuts, fits, and weights unreachable.

Double Take is the first fashion show with SMA community involvement from start to finish, from conceptualizing the message, to collaborating on apparel design, to the walk and runway leading to Fashion New York Week, and is dedicated to all who live with a disability.

The show aims to empower people with disabilities to occupy a space that is often closed to them, and the SMA community invites the world to do a "double take", not because of their disability, but because of their style and individuality.

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Prior to the show, Open Style Lab Adaptive Fashion Design fellows, some of whom are themselves disabled, worked with members of the SMA community to create and modify clothing, depending on the style and the personal needs of each parade participant. Garments feature hidden magnetic closures to create the appearance of buttons without having to fasten them. There are also stretch knit panels instead of zippers, flexible sleeves for easier wheelchair use and other adaptations.

Support for Double Take was provided by biotechnology company Genetech's SMA My Way program, which is an initiative that aims to support those affected by SMA by sharing their experiences and making connections within the community. Genetech, which discovers, develops, manufactures and markets drugs to treat patients with serious and life-threatening diseases, is a member of the Roche Group, headquartered in South San Francisco, California.

"With the support of Genetech, Double Take has given me the opportunity to explore cutting-edge fashion designs that include people of all abilities. I have collaborated with several people living with spinal muscular atrophy to co-create accessible clothing that matches both their personality and their individual needs, including Shane Burcaw, who has SMA and uses an electric wheelchair.To tailor a purple velvet suit for Shane, I added a invisible zipper in the back of the jacket, for easy dressing, and stretch panels at the elbows to accommodate bending.The matching tailored velor pants had two layers - a comfortable L-shaped base and a interchangeable cover that goes over the top,” said Andrea Saleh, 2022 Open Style Lab Fellow for Double Take.

"For someone with spinal muscular atrophy, who sits all the time, suit jackets can be hard to put on and frumpy, very unsexy. We ended up getting a bespoke suit for our wedding, and it looked amazing, but it was still hard to put together.For the Genetech-sponsored Double Take project, we worked with adaptive fashion designers to create a costume that not only looked great, but was also comfortable and much easier to wear. Ultimately, Double Take is about celebrating differences, not trying to erase them. Fashion allows you to do that - to embrace the things that make you different," Shane said. Burcaw, who will be modeling on the catwalk, with his wife, Hannah.