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
The quick, inexpensive test “achieved 100% sensitivity, 100% specificity, and 100% positive predictive value” in one study. Read about it: https://bit.ly/3WRkAoS
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
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
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
How do you feel about the potential of AI one day supporting the SMA community?
How knowledgeable are you about SMA? Take our quiz to see: https://bit.ly/3Mdm3Ry
More formal research on diet in SMA is necessary, but here’s what we know so far: https://bit.ly/3SSwzB6
Does the SMA gene mutation affect other organs, like the liver? New findings suggest so. Read about them here: https://bit.ly/3SO2YZE
Catch up on four-year data from patients receiving the experimental muscle-strengthening therapy here: https://bit.ly/3M7WzoC
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
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
Catch up on the Column of the Week here: https://bit.ly/3AoMFwb
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.
Working alongside your healthcare team will allow you to get the most out of your treatment plan. See how: https://bit.ly/3M99RAU
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
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
Community keeps Ty Dykema physically, mentally, and emotionally sustained. He shares its role in his life with SMA type 2: https://bit.ly/3ArEzD2
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
Here is this week's most-read article featured on our website! Are you caught up? https://bit.ly/3ysg4VH
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
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
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
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
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
If you are a caregiver for someone with SMA, how do you make sure you find time to take care of yourself?
Beyond following general nutrition principles, there are some dietary considerations SMA patients should take into account. We review them here: https://bit.ly/3Yxo16z
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
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
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
Explore how the combination genetic therapy approach “provides new exploratory avenues for the treatment of SMA”: https://bit.ly/3yrnuZ6
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