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News
This SMA Awareness Month, let’s reflect on how far we’ve come
3+ day, 4+ hour ago (475+ words) Newborn screening and novel therapies are changing the SMA landscape Written by Helen Baldwin | July 29, 2026 Ready or not, we’re about to say “Adios!” to another month. Our daughter, Katie, and son-in-law, Paul, arrive today for a whirlwind visit, sending July…...
Remembering the fun-filled summer of '98 with my teenage caregiver
2+ day, 8+ hour ago (271+ words) It was also the first time a caregiver stayed with me during the day Written by Connie Chandler | July 28, 2026 Do you remember the summer of 1998? It’s been a while, so let me remind you. It was the summer after my…...
SMA treatment pause during pregnancy tied to mild motor decline
6+ day, 6+ hour ago (265+ words) Written by Patricia Inacio, PhD | July 24, 2026 A woman with spinal muscular atrophy (SMA) type 3 experienced a mild decline in motor function after pausing Spinraza (nusinersen) during her pregnancy. After she restarted treatment following delivery, however, her motor function stabilized and…...
EU review of apitegromab for SMA awaits US facility check results
1+ week, 1+ day ago (531+ words) Scholar Rock prepares a secondary manufacturing site for apitegromab Written by Marisa Horak, MS | July 22, 2026 EU approval for apitegromab, an experimental SMA therapy, awaits US FDA inspection results of a manufacturing facility. Apitegromab is an add-on therapy for SMA types…...
England expands screening to detect SMA symptoms earlier
1+ week, 3+ day ago (224+ words) Some labs will start testing in October, three months earlier than planned Written by Marisa Horak, MS | July 20, 2026 England is rolling out newborn screening for spinal muscular atrophy (SMA), which will allow all babies born in the country to be…...
My medical devices aren’t an invitation for people to stare at me
2+ week, 1+ day ago (372+ words) When strangers focus on my equipment, they miss out on getting to know me Written by Alyssa Silva | July 17, 2026 “Honey,” I quipped. “You’re asking the wrong person.” I’ve grown so accustomed to people staring at me and my equipment that…...
Study links metabolic flaws in spinal muscles to scoliosis in SMA
1+ week, 6+ day ago (343+ words) Written by Marisa Horak, MS | July 17, 2026 The spinal muscles of spinal muscular atrophy (SMA) patients who also have scoliosis show abnormalities in molecular activity, particularly in biological processes that cells use to metabolize sugar molecules and protein building blocks, according…...
Diagnosis Day packs a different kind of punch 29 years later
2+ week, 3+ day ago (721+ words) New treatments and newborn screening are helping children with SMA live longer Written by Helen Baldwin | July 15, 2026 My husband, Randy, and I moved to the North Carolina mountains in the closing hours of 1995. Although our children, Matthew and Katie, who…...
Pioneering SMA champion to be honored for her disability advocacy
2+ week, 1+ day ago (498+ words) Author, podcast host and MDA exec named a Disability Impact Award winner Written by Marisa Horak, MS | July 15, 2026 A woman with spinal muscular atrophy (SMA) who has become a champion for those living with disabilities — as an author, a podcast…...
Daily SMA treatment helps adults with severe disease, study shows
2+ week, 6+ day ago (643+ words) Evrysdi helps motor function, improves well-being in Netherlands study Written by Andrea Lobo | July 10, 2026 Daily treatment with Evrysdi (risdiplam) may help stabilize or improve motor function and improve well-being in adults with severe forms of spinal muscular atrophy (SMA), according…...