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New York Fashion Week, the SMA takes to the catwalk

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New York Fashion Week, the SMA takes to the catwalk

Shane and Hannah Burcaw are a young couple from Minneapolis and on September 8 they will be at New York Fashion Week for a special event. The two are very social: they are vying for the influencer couple of the year at the American Influencer Awards. They post photos of their wedding, their new home, family outings, dog walks, swimming in the pool, their travels. They are very popular and have over 1.5 million followers on Instagram (their reels are brilliant) and a million on YouTube. Thanks to YouTube they met a few years ago, after Hannah had seen a video of Shane. Then came the video calls, trips to see each other live and be together, coexistence, and marriage. A story like many, many. Why tell it then?

On the catwalk, beyond disability

Shane has spinal muscular atrophy (SMA), a genetic disease that affects motor neurons, and the way he talks about his life with Hannah, with humor, is an invitation not to consider a couple different due to the presence of an important disability. without ignoring it. And in one of the latest videos posted, Shane and Hannah announced that in a few days they will be taking to the catwalk, attending a show that precedes the opening of New York Fashion Week. Not a classic show, of course. It’s called “Double Take” and it’s the first fashion show entirely created by a community with SMA, with the aim of fighting stereotypes and promoting a fashion that meets the real needs of anyone who wears it. “Double Take” was born from the collaboration between Genentech and the non-profit Open Style Lab, committed with a team of experts from different disciplines – from designers, to occupational therapists, to engineers – to make “style accessible to everyone, regardless of their cognitive or physical abilities “.

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Cos’è l’adaptive clothing

Here then is that the fabrics become more elastic where they are needed, the buttons are there but they hide magnets and the sleeves become “flexible” to facilitate the use of the wheelchair. SMA, in fact, causes muscle weakness, breathing difficulties, scoliosis, preventing in many cases (the most serious) from walking. Shane is one of them: he never walked, as the doctors predicted many years ago, but from his wheelchair, he says, he could have whatever he wanted. Studying, getting married, becoming president of a nonprofit that deals with making devices available for people with disabilities (Laughing At My Nightmare), blog and write books. Her latest is titled “Strangers Believe My Girlfriend Is My Nurse” (original title Strangers assume my girlfriend is my nurse).

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Together with him, on 8 September, another 10 people with SMA and 4 volunteers will parade on the Double Take catwalk, all with clothes made to measure by the Open Style Lab designers, some of whom are disabled. “People with disabilities are often seen and known for this trait,” Michael Dunn, senior director of marketing at Genentech, told Endpoint News. But fashion is a way to express yourself and has a major impact on self-esteem. People with disabilities. they deserve to occupy a space that is often closed to them “.

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