SMA News Today
@SMANewsTodayWe are a free digital publication dedicated to sharing the latest news, research, and spinal muscular atrophy (SMA) patient perspectives.
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If shorter, colder days make you want to hibernate, how do muster enough energy to make it through the day? Share your tips in our forums: bit.ly/3O7e9dg #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
Catch up on the #SMANewsToday Column of the Week here: bit.ly/3CmeCpj #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
It’s been four years since DeAnn Runge got her wheelchair, but she’s still working to make it as comfortable as possible. She walks us through her latest efforts. Click to watch our vlogs: bit.ly/3RKFmWl #SpinalMuscularAtrophy #SMACommunity #SMALife #LivingWithSMA
Did you know there’s a rare type of SMA that’s characterized by progressive muscle weakness and seizures? Learn more about it and other uncommon types here: bit.ly/4fKcUMX #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
The SMA treatment landscape has evolved over the past decade, but it encompasses more than just drug therapies. Check out all of the options for addressing the disease and its symptoms here: bit.ly/3UP3NCB #SMATreatment #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
Advanced genetic testing helped clinicians identify novel SMN1 mutations in two children in China, and correctly diagnose them with SMA. bit.ly/48TwjJd
New experimental treatments for SMA aim to enhance SMN protein production, improving outcomes for those with the disease. Read more: bit.ly/3Clpyn1 #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
When columnist Alyssa Silva is sick, she always downplays the symptoms. She's vowed to start listening to her body and its signals. bit.ly/3UPKrgA
Here's a recap of the news and columns we featured this week. Head to our website to read them all: bit.ly/3HSpf2D #SMANewsToday #SMANews #SMAResearch #SMAAwareness #SMACommunity
Here is this week's most-read article featured on our #SMANewsToday website! Are you caught up? bit.ly/3CBfGWg #SpinalMuscularAtrophy #SMAResearch #SMANews
Premature twins with SMA type 0 have made remarkable progress with early treatment of this therapy. Read their story: bit.ly/3O5bmRG #SpinalMuscularAtrophy #SMAResearch #SMANewsToday #SMANews #SMATreatment
As columnist Ari Anderson's home nursing staff fills up, he feels hopeful that more people will come to know the "real me," he says. bit.ly/3OawwOk
Effective communication with your SMA care team is crucial for the best care. Learn strategies to enhance your interactions: bit.ly/4hCE0Ho #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
Halsey Blocher touches on the ways in which SMA affects how people perceive and treat her. She shares her experience here: bit.ly/4ezJ7FS #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
Muscle fibers in children with SMA type 1 show substantial differences in components of the myosin protein called heavy chains early in life. bit.ly/3O6RNZl
During times when SMA seems to be getting the best of you, how do you fight back to keep your motivation? #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
Hugo Trevino pays tribute to the caregivers who have made it possible to navigate a world not meant for those with SMA. bit.ly/48HwF5v #SMAAwareness #SMACommunity #LivingWithSMA #FacesOfSMA #SMAAwarenessMonth
The physical symptoms and daily challenges of SMA can undoubtedly take a toll on mental health. Consider these ways to enhance your mental well-being while navigating the disease: bit.ly/3UGFJBY #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
The best tracking system will be the one that works for you. From journals to digital tools, the options are numerous. See why you should consider creating a personalized plan soon: bit.ly/3UCGsUI #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #LivingWithSMA
Take a look at a few techniques that may help support your pain management regimen: bit.ly/4fg1nF9 #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA
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Who to follow
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Cure SMA
@CureSMA -
Spinal Muscular Atrophy UK
@SMA_UK_ -
SMA-Europe
@SMAEurope -
Cure SMA Foundation of India 🇮🇳
@curesmaindia -
TREAT-NMD
@TREAT_NMD -
HCP SMA
@SmaHcp -
Rare Diseases Clinical Research Network
@rarediseasesnet -
Brunhilde Wirth
@BrunhildeWirth -
Journal of Neuromuscular Diseases
@journal_nd -
NORD
@RareDiseases -
Melissa Bowerman
@BowermanNMD -
Moumita_SMA_Mom
@MoumitaG_17 -
Archana Vashist Panda
@PandaVashist -
Alpana Sharma
@alpanaS16 -
Elina Miaouli
@ElinaMiaouli
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