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Top SMA News Today News

Several Conn. Families Receive Customized Toy Cars to Help Their Kids with Mobility

Several Conn. Families Receive Customized Toy Cars to Help Their Kids with Mobility

100% Left coverage: 1 sources

On Saturday, several Connecticut families received custom toy cars to provide their kids with a chance to be independently mobile. “It means a lot,” said Stephanie Fisher whose 1-year-old son Iggy received a car. “All of the challenges that he’s had, it has really taken a village.” The program is a part of the Quinnipiac University’s participation in Go Baby...See the Story

European Commission Approves Revolutionary First-Ever SMA Tablet Treatment: Roche's Evrysdi Changes Patient Care

European Commission Approves Revolutionary First-Ever SMA Tablet Treatment: Roche's Evrysdi Changes Patient Care

New room-temperature stable Evrysdi tablet offers greater independence for SMA patients. First non-invasive option reaches 18,000+ globally. Learn more.See the Story

What it really takes to take me out to the ballgame

Baseball · Worcester

What it really takes to take me out to the ballgame

If you’re American and have attended a baseball game, then I imagine you’ve probably heard the song “Take Me Out to the Ball Game.” Known as the most beloved song in baseball, this classic tune has been an anthem of summer for decades. For most, it’s joyous. It’s carefree and always sets the tone for an exciting day of peanuts, Cracker Jack, and baseball. However, as someone living with spinal muscular atrophy (SMA), the logistics behind taking …Read Article

Phase 1 of 'Connie Care' is an opportunity to connect with others

“OK, so just pick up my arm and rest my elbow on the table right here, with my hand up toward my face. That’s right. Now do the same thing with my other arm. Yeah, like that, but move my elbows closer together. Great! Now pick up my coffee mug and put it in my hands. Wait, let me get my hands underneath it, and don’t let go until I say so! Good, I’ve got it, now you can let go.” I gave these odd step-by-step instructions to the girl sitting next…Read Article

The advantage of finding the good in everything, no matter what

As a Pollyanna, columnist Helen Baldwin has a tendency to find the good in everything — even in the midst of despair.Mississippi · Mississippi Read Article

Spinraza benefits in SMA types 2, 3 seen on muscle MRIs: Study

A quantitative MRI scan, which shows detailed images of muscles, can be used to track changes seen with Spinraza (nusinersen) treatment in children with spinal muscular atrophy (SMA), according to a new study from China. SMA children started on the approved therapy at a younger age also were found to have better results, per the researchers. Overall, the findings suggest that qualitative MRI or “qMRI has the potential to be used to evaluate the …Mississippi · Mississippi Read Article

SMA children more independent with Spinraza treatment: Study

After Spinraza (nusinersen) treatment for slightly longer than one year, school-aged children with spinal muscular atrophy (SMA) showed improved motor function and more independence in tasks involving their arms and hands, a study from China has found. These motor function improvements were linked to reduced symptoms of anxiety and depression, highlighting the impact of physical improvements on mental well-being, according to researchers. “The f…China · China Read Article

Shower confessional: How vulnerability can deepen friendship

Confession: I do not enjoy taking showers. Please don’t misunderstand me; I absolutely love the feel of hot water on my skin, the sweet fragrance of scented soaps, the soothing comfort of a shampooed head massage, and the lifestyle of good hygiene! But as an adult with SMA, the whole experience is tainted by an uncomfortable and unavoidable awkwardness that drains all the fun out of it. I have a very cool shower setup in my bathroom at home, act…Read Article

Living with SMA makes life transitions look different

One of my favorite comfort shows is the CBS sitcom “How I Met Your Mother.” Centered around the romantic quest of Ted Mosby, who as his older self recounts to his kids the story of him meeting their mother, the series is also an ode to lifelong friendships. Surrounding Ted are his best friends, Marshall, Lily, Barney, and Robin. The miscellaneous adventures of this ragtag group are prominent throughout all nine seasons of the show. Most of the t…New York State · New York Read Article

AJ201 shows good safety, hints of efficacy in SBMA clinical trial

Treatment with AJ201 was well tolerated and showed signs of improving physical activity in a clinical trial involving people with spinal and bulbar muscular atrophy (SBMA), according to new data announced by developer Annji Pharmaceutical. “I am greatly encouraged by the positive clinical outcomes observed after a relatively short course of AJ201 treatment,” Wendy Huang, PhD, CEO and chairperson of the board at Annji, said in a company press rel…Maryland · Maryland Read Article

Medicines into amniotic fluid may be way to treat SMA before birth

Injecting medicines into the amniotic fluid — the liquid that surrounds a developing fetus during pregnancy — may be a viable strategy for treating spinal muscular atrophy (SMA) before birth, according to a new study done in animal models. “These data demonstrated that [injecting therapies into amniotic fluid] holds potential as a minimally invasive approach for prenatal treatment of SMA and possibly other severe, early-onset neurological disord…Animals · Mississippi Read Article

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