How my mother gave everything she had to a child with SMA
“You must have dropped the baby.” That sentence was one of the many knives flung at my mother’s chest when I was diagnosed with SMA. She was 24, barely an adult. I was a…
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A ‘Potato’ helps us celebrate a special birthday
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…
Australia, New Zealand develop guidelines for SMA newborn screening
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…
The day my new multitasking caregiver and I learned to find our rhythm
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…
Newborn screening tied to better daily function in children with SMA
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…
Apitegromab moves closer to potential FDA approval for kids, adults with SMA
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…
How comfort and routine are vital while living with SMA
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…
Screening leads to earlier treatment, better results for SMA children: Study
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…
In my life with SMA, I strive to find the balance between joy and sorrow
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,…
U.K. consensus sets new guidance for hip care in children with SMA
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…
Recent Posts
- Scientists uncover key details on how nerve cell death occurs in SMA
- How my childhood comfort movie grew into a once-impossible reality
- Surprises from the garden and their healing power
- Treatment may ease nighttime breathing issues in adults with SMA
- When I forget my limits, I must remember the need for a little grace