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“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and the wife retire to Fort Lauderdale, you start eating dinner at 2 o’clock in the afternoon, you have lunch around 10, breakfast the night…

After two years of tweaking, my new wheelchair is home for good. I think. Most wheelchair users dread new devices. There’s the process of submitting the claim to insurance, which is frankly straight from hell. Then there’s the seating — a monthslong process that involves strangers studying your…

Among adults with spinal muscular atrophy (SMA), men show signs of greater disease severity than women, particularly as young adults, according to a recent study. For patients with SMA type 3, a greater proportion of women were able to maintain their ability to walk compared with men. “Gender…

Right about now, most people in the U.S. are preparing for Halloween by buying candy for trick-or-treaters, making costume alterations, and planning parties. That’s all fun, but since childhood, I’ve been drawn toward a different holiday: el Día de los Muertos, or Day of…

After two years of treatment with Evrysdi (risdiplam), most babies with spinal muscular atrophy (SMA) type 1 in the FIREFISH clinical trial are still alive without a need for permanent ventilation, and many of the youngsters are showing continual improvements in motor development. The results were published…

Do you ever look back at experiences from when you were younger and view them differently as an adult? I find myself doing that quite a bit lately. Kids look at life through rose-colored lenses. I see that in the way my little niece and nephew…

It may be annoying to some, but I’m one of those people who look forward to Christmas starting in October. Sorry, not sorry. So many of my favorite memories are either directly or indirectly related to this special day. If you ask my mom, she wouldn’t consider Christmas Eve…

I credit my mother for my affinity for (most) things hair-raising. She loved thrillers. While her vision allowed, she was drawn to the TV shows “Forensic Files” and “Criminal Minds,” delighted to learn that our daughter, Katie, was also a fan. Halloween’s creepy stuff…

Continued treatment with apitegromab, designed to strengthen muscles, led to stabilization or improvement in measures of fatigue and life quality for children and young adults with types 2 and 3 spinal muscular atrophy (SMA), according to new data from the TOPAZ clinical trial. According to apitegromab’s developer…

You know when something is wrong, but you can’t put your finger on what, exactly, that is? The past week has been an exercise in expecting the unexpected. I woke up Wednesday morning to a weeks-early period. “Fine,” I thought. “I’m flexible. I can adapt. This is no big…