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Treatment options for spinal muscular atrophy (SMA) have become available in recent years, as research about SMA itself continues to expand. This summer, the SMA community received exciting news, as the FDA approved a new treatment option called Evrysdi (risdiplam). It’s a prescription medication used to treat SMA in infants,…
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A mother’s perspective: How our family measures progress since treatment You couldn’t picture a happier or more beautiful little boy than the one who came into our lives on January 4, 2019. Little did we know, this bundle of joy we named Slade was just starting a journey that was…
Let’s be honest, spinal muscular atrophy (SMA) is overwhelming, confusing, and scary for everyone. We were shocked and heartbroken the moment we were told our son, Malachi, then 3 months old, has SMA Type 1. So much was happening as we processed this devastating news—from being told he would only…
You may have heard the saying, “It takes a village to raise a child.” Truer words have never been spoken, especially for those of us raising a child with spinal muscular atrophy (SMA)—even after receiving treatment with ZOLGENSMA® (onasemnogene abeparvovec-xioi). Over the past couple of years, our village has included…
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