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4 weeks ago | 
smanewstoday.com | Ari Anderson |Marisa Wexler |Halsey Blocher |Kevin Schaefer
In addition to moving into my new home in February, I’m been experiencing several other major changes. I’ve been bracing myself for them since they arrive in waves. Thankfully, several anchors in my life add stability and prevent me and the wheels of my chair from being swept away. First I want to talk about what’s keeping me grounded in my new home. It’s comforting to know that my family feels more whole since my mom and I moved in with my sister and her family.
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1 month ago | 
smanewstoday.com | Marisa Wexler |Ari Anderson
Treatment with Spinraza (nusinersen) can help stabilize motor function in adults with spinal muscular atrophy (SMA), according to a new analysis.
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1 month ago | 
smanewstoday.com | Jasmine Ramos |Halsey Blocher |Ari Anderson |Kevin Schaefer
When I close my eyes, I see the world as it should be — a place where accommodation isn’t something to fight for; where people with disabilities don’t have to plan every step, hoping the next doorway isn’t too narrow, the next curb isn’t too high, and the next space isn’t too crowded. In my dream world, barriers don’t exist. But that’s not the world I live in.
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1 month ago | 
smanewstoday.com | Ari Anderson |Marisa Wexler |Jasmine Ramos |Kevin Schaefer
Now that I’ve been living in my new house for a month, I better understand what I love about it. In my last house, where we’d lived since I was 13, I had my own home within the home, which included my bedroom, bathroom, kitchen, and medical supply room. These rooms were designed to meet all my SMA needs while my mom had her own rooms on the other side of the house. Having my own “bachelor pad” in that house was pretty cool.
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1 month ago | 
smanewstoday.com | Sherry Toh |Kevin Schaefer |Ari Anderson
Second in a series. Read part one. My mum likes to say that my home-care nurse is like a second mother to me, and I’d have to agree. Ever since my SMA care was transferred from a pediatric to a general hospital after I turned 18, my home-care nurse, who is assigned to me for things like home checkups, has been an emergency contact.
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1 month ago | 
smanewstoday.com | Marisa Wexler |Steve Bryson |Ari Anderson |Alyssa Silva
The Muscular Dystrophy Association‘s (MDA) annual Clinical & Scientific Conference kicked off over the weekend, bringing together patients, caregivers, researchers, clinicians, academics, advocates, and industry leaders to discuss the latest in science and care related to a range of neuromuscular diseases. This year’s conference will bring together hundreds of participants from 39 countries, Morgan Roth, chief marketing officer of the MDA, told Bionews, the parent company of this site.
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2 months ago | 
smanewstoday.com | Helen Baldwin |Ari Anderson |Marisa Wexler |Lindsey Shapiro
In September 1995, my parents began running the family’s newly acquired lodge on the stunning Blue Ridge Parkway. My husband, Randy, our two children, Matthew and Katie, and I lived about an hour away at the time. I drove up every day to help with lodge business. As the parkway’s fall colors worked their magic, we found an old farmhouse near the lodge and moved in. We discovered an old cemetery on top of the little mountain on our property. Talk about foreshadowing.
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Jan 31, 2025 | 
smanewstoday.com | Marisa Wexler |Ari Anderson |Helen Baldwin
With deep sadness, we announce the passing of our dear friend and longtime contributor, DeAnn Runge. DeAnn had many roles at Bionews, the parent company of SMA News Today. She was a forum moderator, spinal muscular atrophy (SMA) community advocate, and member of our recently established Patient Advisory Board. She hosted her beloved YouTube series, “Dose of DeAnn,” for seven years and created more than 170 videos. DeAnn passed away Jan. 21, 2025, at the age of 45 after a sudden illness.
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Jan 30, 2025 | 
smanewstoday.com | Ari Anderson |Margarida Maia
The weather can affect those of us with SMA in ways that many people wouldn’t think of. For example, I wish I could just enjoy looking out of the window as the snow falls, with everything I need to wait out a winter storm. But in my reality, ice, sleet, and snow are problematic in terms of the care I need to receive from others, which causes me a lot of stress and anxiety. I live in a part of North Carolina where we don’t get many winter storms.
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Jan 17, 2025 | 
smanewstoday.com | Alyssa Silva |Steve Bryson |Ari Anderson |Katie Napiwocki
As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been spreading across the country. All I could do was roll my eyes. After the past several weeks, I didn’t need a news article to tell me how rampant viruses were in the community. I also didn’t need my anxiety levels to be higher than they already were.
