SMA community partners with Genentech and Open Style Lab to debut first-of-its-kind runway show

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SMA community partners with Genentech and Open Style Lab to debut first-of-its-kind runway show

The spinal muscular atrophy (SMA) community  partnered with the non-profit organization Open Style Lab (OSL) to develop a first-of-its-kind runway show, Double Take, that aims to increase authentic disability representation in the creative sphere and spotlight the need for adaptive design in fashion. SMA is a progressive neuromuscular disease that can impair walking, dexterity and overall strength, which makes clothing with certain fasteners, cuts, fits, weights and silhouettes inaccessible.

Double Take, which occurred September 8th and can be viewed here,  is the first ever fashion show with start-to-finish SMA community involvement – from conceptualizing the message, to collaborating on clothing designs, to walking and rolling the runway as a prelude to New York Fashion Week — and is dedicated to everyone living with a disability. Through this show, the SMA community is inviting the world to do a double take, not because of their disabilities but because of their style and individuality.

Fashion designers at Open Style Lab, some of whom have disabilities themselves, created and modified garments according to each runway participant’s personal style and needs. Adaptations include hidden magnetic closures to create the look of buttons without the challenge of fastening them, stretch knit panels instead of a zippers, and seated-fit pants.

Support for Double Take was provided by biotechnology company Genentech’s SMA My Way program, which is an initiative that aims to support all people impacted by SMA by sharing lived experiences and building connections within the community. The show’s models included Amber Wang, BrookeAB, Katya Tolstova, Gabe Adams, Shane Burcaw, Hannah Burcaw, and James Ian. Ian is the singer/songwriter featured in an earlier SMA My Way effort, the song and video “Spaces.” The video itself was entirely concepted and directed by members of the SMA My Way community

ABOUT SPINAL MUSCULAR ATROPHY (SMA)

SMA is a rare, severe, progressive, neurodegenerative disease that affects the motor nerve cells in the spinal cord and the muscles used for vital activities including breathing, eating and walking. SMA does not impact the ability to think, learn and build relationships with others.

ABOUT GENENTECH
Founded more than 40 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious and life-threatening medical conditions. The company, a member of the Roche Group, has headquarters in South San Francisco, California. For additional information about the company, please visit http://www.gene.com.

ABOUT OPEN STYLE LAB (OSL)
Established in 2014, Open Style Lab (OSL) is a 501(c)(3) organization dedicated to creating functional, wearable solutions for people of all abilities without compromising style. OSL teams designers, engineers and occupational therapists conceive and build accessible wearables that address the needs of and with people with disabilities. Their mission is for all people to have access to style, regardless of ability, through education, research and innovation, corporate collaborations and raising awareness. For more information, please visit https://www.openstylelab.org/.


Show Credits:
Produced and Directed by Lynne O’Neill
Styled by Don Sumada
Accessible Design and Adaptations by Open Style Lab fellows Kyle Brogan,
Catherine Burkey, Jenna Dewar, Kiley Gallant, Rosemary Loh, and Andrea Saieh
Campaign and Creative Strategy by Adam Pryor
Campaign PR and Creative by Syneos Health
Front of House PR by PURPLE
Scenic by SBI
Lighting and Sound by Dave Overcamp
Music by Laurent Vacher (Maison Labtonic)
Makeup by Fawn for GIELLA Custom Blend Cosmetics
Hair by AVEDA
Nails by Pattie Yankee for Pattie Yankee Products
Alterations by Darlene DeAndrade
Dressed by Barbara Berman (BB’s Backstage)
FOH Photography by Shutterstock
BTS Photography by Clifton Mooney
Portrait Photography by Victor Llorente
Videography, Livestream and Motion Design by Greg Fellows (Essay Video)
Sponsored by Genentech