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 researchers 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.

Take a closer look: https://bit.ly/4dlugRqChildren and adults with SMA and their caregivers may experience clinically re...
09/18/2026

Take a closer look: https://bit.ly/4dlugRq

Children and adults with SMA and their caregivers may experience clinically relevant mental health symptoms, a German study found.

Children and adults with SMA and their caregivers may experience clinically relevant mental health symptoms, a German study found.

From dreaming of an SMA treatment to having multiple options to choose from, it’s a reality that can still feel surreal....
09/18/2026

From dreaming of an SMA treatment to having multiple options to choose from, it’s a reality that can still feel surreal. 💙

In his latest column, Kevin Schaefer reflects on the rapid evolution of SMA treatments, what these approvals mean for the community, and the complicated emotions that can come with having choices after growing up without any.

🔗 Find more of Kevin's point of view here https://bit.ly/4hspUdD

Big news for the rare disease community! 💙 EveryLife Foundation for Rare Diseases is now RARE Foundation — with a new na...
09/18/2026

Big news for the rare disease community! 💙 EveryLife Foundation for Rare Diseases is now RARE Foundation — with a new name, logo, and look, but the same commitment to accelerating treatments, diagnoses, and meaningful change for people living with rare diseases. RARE Foundation
Learn more about the rebrand and the work behind RARE Foundation at RAREADVOCATES.ORG.

Get the scoop: https://bit.ly/4gX8Ex4Columnist Ari Anderson has learned to use his time wisely so that he can enjoy fun ...
09/18/2026

Get the scoop: https://bit.ly/4gX8Ex4

Columnist Ari Anderson has learned to use his time wisely so that he can enjoy fun activities while also completing the work he loves.

Columnist Ari Anderson has learned to use his time wisely so that he can enjoy fun activities while also completing the work he loves.

Discover more: https://bit.ly/4ivBkhRKeynote speaker Mindy Henderson redefines "impossible" ahead of MDA Engage: Chicago...
09/17/2026

Discover more: https://bit.ly/4ivBkhR

Keynote speaker Mindy Henderson redefines "impossible" ahead of MDA Engage: Chicago, taking place Sept. 25-26 at the Westin Chicago Lombard.

Keynote speaker Mindy Henderson redefines "impossible" ahead of MDA Engage: Chicago, taking place Sept. 25-26 at the Westin Chicago Lombard.

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