Three months ago, my husband, Randy, and I adopted Ellie, a mama dog who had been at the rescue for four months. She arrived with six puppies, tending to another litter after hers were adopted. “Tending” might…
Evidence-based guidelines have been developed for newborn screening (NBS), diagnosis, and early management of spinal muscular atrophy (SMA) in Australia and New Zealand to help ensure that all affected children are identified and treated as early as…
Caregivers are an essential aspect of my life with SMA, because I need assistance to do most of my activities of daily living. But I am learning more and more that caregiving…
Children with spinal muscular atrophy (SMA) who were diagnosed through newborn screening and treated early had better long-term independence and daily functioning, especially when supported by multidisciplinary care at home and at school, according to…
The U.S. Food and Drug Administration (FDA) is expected to decide in the coming months whether or not to approve apitegromab, an experimental muscle-strengthening agent designed to improve motor function in people with…
Because I live with SMA, I value comfort and routine, which help to alleviate some of the hardship and stress that come with managing this disease. Since January, a new day nurse has been doing her…
Children with spinal muscular atrophy (SMA) who have two or fewer copies of the SMN2 gene — a feature typically associated with more severe disease — are more likely to start treatment early and reach key…
I’m not one to turn down a compliment, but as a woman living with spinal muscular atrophy (SMA), I do not consider physical balance to be among my strongest skills. So,…
A panel of experts has developed the first U.K. national consensus recommendations for preventing and managing hip problems in children with spinal muscular atrophy (SMA), aiming to support earlier monitoring and more consistent care…
Our journey began long before my son, Hussein, was born. Due to a family history of SMA, my husband underwent genetic testing to be sure he was not a carrier. We received news that he…
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