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Photo courtesy of Chaz Hayden Day 4 of 31 This is Chaz Hayden’s (@thechazhayden) story: Hey, friends! My name is Chaz, I’m 25 years old, and I have SMA type 1. I’m a soon-to-be-published author with my debut novel, The First Thing About You, releasing in fall…
Photo courtesy of Ainaa Farhanah Amali Day 3 of 31 This is Ainaa Farhanah Amali’s (@ainaafrhanah) story: “Sweet, sour, salty, mixed” — that’s how I describe Year 2 of the COVID-19 pandemic, which of course has not ended yet. Last year, when the first cases were announced, many…
Photo courtesy of Rachel Stewart Day 2 of 31 This is Rachel Stewart’s story: Growing up, I didn’t have any role models with my disability, let alone know someone with SMA who was married, or in a queer relationship. And I certainly didn’t see any representation on TV or…
Photo courtesy of Alvaro Cheherlian Day 1 of 31 This is Alvaro Cheherlian’s (@_hotwheelz) story: Being an entrepreneur is hard. Being an entrepreneur with SMA adds challenges that make it even harder, but I didn’t let that stop me. My name is Alvaro Cheherlian, I have type…
SMA News Today’s 31 Days of SMA campaign will publish one story per day from someone who has been affected by the disease for SMA Awareness Month in August. Stay tuned for the first story in the series starting on Aug. 1, and follow us on Facebook and Instagram for…
On the eve of the weekend Christmas holiday, the U.S. Food and Drug Administration (FDA) approved Biogen’s therapy Spinraza (nusinersen) for the treatment of spinal muscular atrophy in both children and adults. The landmark approval marks the first time the federal agency has approved a therapy that directly treats the orphan disease, which is…
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