SMA News Today

We are dedicated to sharing the latest news, research, and SMA patient perspectives.

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

08/22/2024

The quick, inexpensive test “achieved 100% sensitivity, 100% specificity, and 100% positive predictive value” in one study. Read about it: https://bit.ly/3WRkAoS

08/22/2024

SMA is taking up most of Brianna Albers’ bandwidth these days, so she’s had to reevaluate how she views and approaches advocacy. https://bit.ly/3yTMIQ0

08/21/2024

For most of Carli Hamilton’s life, she was convinced she could never have kids because of SMA. Now, she struggles to imagine a world without her daughter. https://bit.ly/4dUmDiz

08/21/2024

For most of Carli Hamilton’s life, she was convinced she could never have kids because of SMA. Now, she struggles to imagine a world without her daughter. https://bit.ly/4dUmDiz

08/21/2024

How do you feel about the potential of AI one day supporting the SMA community?

08/20/2024

How knowledgeable are you about SMA? Take our quiz to see: https://bit.ly/3Mdm3Ry

08/20/2024

More formal research on diet in SMA is necessary, but here’s what we know so far: https://bit.ly/3SSwzB6

08/20/2024

Does the SMA gene mutation affect other organs, like the liver? New findings suggest so. Read about them here: https://bit.ly/3SO2YZE

08/19/2024

Catch up on four-year data from patients receiving the experimental muscle-strengthening therapy here: https://bit.ly/3M7WzoC

08/19/2024

Researchers found that the abnormal buildup of fat in the liver was a result of altered fat metabolism caused by SMN1 gene mutations. See more: https://bit.ly/3SO2UsS

08/18/2024

If you’ve transitioned to using ENFit connectors, what issues have you encountered, if any? Have you found any workarounds? Share in our forums: https://bit.ly/4dDOG61

08/18/2024

Catch up on the Column of the Week here: https://bit.ly/3AoMFwb

08/18/2024

Are you caught up on our Faces of SMA campaign? DeAnn Runge explains the SMA Awareness Month initiative and invites you to add your own story:

Click here to watch our vlogs: https://bit.ly/3PWapMn.

08/17/2024

Working alongside your healthcare team will allow you to get the most out of your treatment plan. See how: https://bit.ly/3M99RAU

08/17/2024

While the main SMA types are caused by SMN1 gene mutations, rarer disease types result from other gene mutations. Explore them now: https://bit.ly/4djH9t7

08/17/2024

The last decade has seen major development in treatment options for SMA. We delve into the various types and what they aim to do here: https://bit.ly/3WMYS54

08/16/2024

Community keeps Ty Dykema physically, mentally, and emotionally sustained. He shares its role in his life with SMA type 2: https://bit.ly/3ArEzD2

08/16/2024

Here's a recap of the news and columns we featured this week. Head to our website to read them all: https://bit.ly/3HU0d3k

08/16/2024

Here is this week's most-read article featured on our website! Are you caught up? https://bit.ly/3ysg4VH

08/16/2024

All patients were using or had been given at least one of the three approved DMTs, suggesting that current therapies may be insufficient to address such an issue. https://bit.ly/3AoMAIT

08/15/2024

Have you tried water therapy to help add more physical activity into your life? Explore this activity and others that may be useful with SMA: https://bit.ly/4dmPjkx

08/15/2024

According to one study’s results, current measures fail to capture the full impact of SMA — for example, the disease’s effects on fatigue and pain. Learn more: https://bit.ly/3YI0m3q

08/15/2024

Halsey Blocher says her wheelchair is an extension of her own body, but it’s also a canvas. See how it helps her find beauty in disability: https://bit.ly/3WWyK9x

08/14/2024

Kristen Resendez, mother to a 9-year-old with SMA type 1, reflects on parenting a child with a rare disease and the lessons it’s taught her: https://bit.ly/3WJHwGj

08/14/2024

If you are a caregiver for someone with SMA, how do you make sure you find time to take care of yourself?

08/13/2024

Beyond following general nutrition principles, there are some dietary considerations SMA patients should take into account. We review them here: https://bit.ly/3Yxo16z

08/13/2024

Those with SMA type 1 or 2 are more likely to develop scoliosis, but other abnormal curvatures may also occur. Learn more: https://bit.ly/3Yxo16z

08/13/2024

Cognitive problems were more likely in boys and in those requiring assisted ventilation or feeding. Read more about the study’s findings: https://bit.ly/3WVOOs4

08/12/2024

Researchers note that data from real-world safety studies, especially those involving young SMA patients, are lacking. See what their findings add: https://bit.ly/4ciqq8p

08/12/2024

Explore how the combination genetic therapy approach “provides new exploratory avenues for the treatment of SMA”: https://bit.ly/3yrnuZ6

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