Disability News Articles
Why I’m crowdfunding for the SMA treatment Evrysdi
My hands are shaking as I look at my crowdfunding page and type. My mouth is dry and my heart is pounding. I feel like an overheated device running too many apps at once, except the apps are emotions. Anxiety tops the list. For half a year, I’ve known the day would come that I’d […]
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MDA 2023: Evrysdi’s motor benefits found to last for 4 years in trial
Motor function is still stable or improved among people with spinal muscular atrophy (SMA) types 2 and 3 after four years of treatment with Evrysdi (risdiplam), according to updated results from the SUNFISH clinical trial. Patients and caregivers also reported continuous improvement or stabilization in the level of help needed to perform daily life activities. […]
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What to Know When Speaking with a Sign Language Interpreter
More organizations are taking advantage of sign language interpreter services. In 2021, the White House announced that it would provide American Sign Language (ASL) interpreters at all daily press briefings, and more recently, Rihanna’s ASL interpreter became a viral sensation for her energetic interpretation during the 2023 Super Bowl halftime show.Read More
Don’t Wait for New Tech to Make Your Site Accessible
In recent years, advances in artificial intelligence (A.I.) have simplified much of the work of accessibility.Read More
Zolgensma gene therapy for SMA now routinely accessible in UK
The one-time gene therapy Zolgensma (onasemnogene abeparvovec) will now be routinely accessible at low or no cost to presymptomatic infants in England who are genetically predisposed to spinal muscular atrophy (SMA). Per updated recommendations from the country’s National Institute for Health and Care Excellence (NICE), this includes children younger than age 1 with two mutated […]
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The truth about living with your middle-aged parents
If it’s not my mom rocking out to “The Final Countdown” by Europe, it’s my dad reminiscing about all the cartoons we used to watch. Shows like “Arthur” and “Dragon Tales” were mainstays in the Albers household. But my favorite was “Cyberchase,” an after-school program about a bunch of kids using math to traverse the […]
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4 Reasons to Add Transcripts for Your Videos
New medical equipment reminds me of the harsh reality of SMA
“OK, SMA. You win,” I thought after signing off from a virtual meeting. I didn’t know how it was possible to feel so defeated yet relieved about finding a solution for one of my recent health woes. But there I was, staring up at my ceiling and arguing with my intrusive thoughts about why this […]
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Zolgensma into spinal canal helped older SMA type 2, 3 children
Older children with spinal muscular atrophy (SMA) type 2 or 3, ages 2–5, given a single injection of Zolgensma into the spinal canal, showed clinically meaningful gains in motor function after one year, according to final data from the STRONG study. Such gains also were significantly better than those observed in similar SMA children who […]
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Are Embedded YouTube Videos Bad for Accessibility?
If you’re adding video to your website, you have two basic options: Host the video on your own server, or use the embed code from a video-sharing website.Read More