SMA News Today

SMA News Today Your source for spinal muscular atrophy news, support, & real stories from the community. Let’s raise SMA awareness together!🎗️

SMA News Today is a leading online health, science, and research publication, focused on delivering daily news and information about SMA to those affected by the disease, as well as providing first-hand perspectives from members of the patient community. Our news and information articles are written by a dedicated team of science writers, curated, fact-checked, and edited by a team of PhD research

ers and experienced journalists whose sole focus is ensuring our news and information is accurate, timely, relevant, and easy to understand. Our columns are written by SMA patients and caregivers who provide an intimate look at what it’s like to live with SMA. Their stories offer a realistic first-hand account of various aspects of the disease, in addition to providing inspiration and hope to our patient communities. We also offer audio content, such as The Spinal Muscular Atrophy Podcast, hosted by SMA patient Kevin Schaefer. SMA News Today also hosts forums, where members of the community can connect with one another.

Exciting update for families affected by SMA! https://bit.ly/4ljeLvf 🌟 Salanersen, a once-yearly treatment, is helping c...
07/16/2025

Exciting update for families affected by SMA! https://bit.ly/4ljeLvf 🌟

Salanersen, a once-yearly treatment, is helping children—including those who’ve had gene therapy—achieve new milestones like sitting and walking within a year. 🚀 It works by slowing nerve damage and strengthening muscles. Ongoing trials mean even more hope is on the horizon for the SMA community. 💙

⚡️ New hope for SMA! https://bit.ly/3TtJAB9 🔬Spinal cord stimulation is an innovative therapy that uses gentle electrica...
07/15/2025

⚡️ New hope for SMA! https://bit.ly/3TtJAB9 🔬

Spinal cord stimulation is an innovative therapy that uses gentle electrical pulses to improve muscle strength and reduce fatigue. Early studies show improved movement and walking in adults with SMA. Could this be the next big step in SMA care? 💙

We’re deeply saddened to announce the passing of Madelyn Milave, a passionate voice whose insight helped many. Diagnosed...
07/14/2025

We’re deeply saddened to announce the passing of Madelyn Milave, a passionate voice whose insight helped many.

Diagnosed with SMA type 2 at 18 months old, she took pride in advocating for her independence and helping others do the same. Her guidance and spirit of encouragement will continue to ripple through Bionews and the disease community as a whole.

Molecular markers in cerebrospinal fluid may help predict if people with SMA type 2 or type 3 will respond to treatment ...
07/14/2025

Molecular markers in cerebrospinal fluid may help predict if people with SMA type 2 or type 3 will respond to treatment with Spinraza. https://buff.ly/Y16FWuG

Exciting news for the SMA community! https://bit.ly/3TqimeP 🌟 A real-world study from Belgium shows that Evrysdi (risdip...
07/14/2025

Exciting news for the SMA community! https://bit.ly/3TqimeP 🌟

A real-world study from Belgium shows that Evrysdi (risdiplam) is safe and effective for adults with SMA, helping to improve or stabilize motor and lung function over two years. Patients also reported better quality of life and less fatigue. Discover more about these promising results on our website! 💪🫁

What’s your favorite speech-to-text app or tool? https://bit.ly/4kugmgD 🗣️💻 Check out our forum thread where people with...
07/13/2025

What’s your favorite speech-to-text app or tool? https://bit.ly/4kugmgD
🗣️💻

Check out our forum thread where people with SMA share their experiences and tips—from built-in Mac and Windows tools to Dragon Professional and even custom solutions! If you have a favorite app or advice for making dictation easier, join the conversation and help others find what works.

07/12/2025

It’s officially Disability Pride Month. As someone with SMA, how do you define “disabled,” and do you characterize yourself as such? We’d love to hear your thoughts!

A group of questionnaires called PROfuture can meaningfully measure a variety of symptoms of SMA that impact patients, a...
07/11/2025

A group of questionnaires called PROfuture can meaningfully measure a variety of symptoms of SMA that impact patients, a study reported. https://buff.ly/PATKg5C

Columnist Connie Chandler shares how traveling with SMA isn't a solo journey, but an opportunity to deepen bonds with pe...
07/11/2025

Columnist Connie Chandler shares how traveling with SMA isn't a solo journey, but an opportunity to deepen bonds with people she loves. https://buff.ly/qD1a2It

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