SMA News Today

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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

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.

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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Videos

Faces of SMA

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 #SMAAwareness #SMACommunity #LivingWithSMA #FacesOfSMA #SMAAwarenessMonth

SMA vlog Dose of DeAnn

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. #SMACommunity #SMALife #LivingWithSMA #FacesOfSMA #SMAAwarenessMonth

SMA Weekly Review

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 #SMANewsToday #SMANews #SMAResearch #SMAAwareness #SMACommunity

Faces of SMA

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 #SMAAwareness #SMACommunity #LivingWithSMA #FacesOfSMA #SMAAwarenessMonth

SMA + Kidney Stones = A Recipe for Hospitalization

On this episode of the Morale Monologue, Michael shares his recent experience with kidney stone removal. Watch him here. Click here to watch our vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

This week on SMA News Today

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 #SMANewsToday #SMANews #SMAResearch #SMAAwareness #SMACommunity

College life with SMA taught me self-advocacy's importance

When she got to college, Gabrielle Runyon, who has SMA type 2, learned she would have to advocate for herself — because no one else would. https://bit.ly/4dvVouE #SMAAwareness #SMACommunity #LivingWithSMA #FacesOfSMA #SMAAwarenessMonth

I Broke My Jaco

In her latest, DeAnn Runge shares how she broke her Jaco robotic arm — and the process she has to go through to get it fixed. Watch her here. Click here to watch our vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

I want you to know SMA makes you a valuable hire

LaMondre Pough, living with SMA type 2, shares why SMA patients are uniquely qualified for the workforce. Watch him here: https://bit.ly/3WsvEIO #SMAAwarenessMonth #SMACommunity #SMALife #LivingWithSMA #FacesOfSMA

Striking a Nerve Can Be a Real Pain

Most SMA patients receive injections without any complications. Michael Morale typically does too — except during his last one. Click here to watch our vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Defining Wellness on Your Terms With SMA

What does your idea of healthy look like in the midst of SMA? Here are a few tips for creating a version right for you: https://bit.ly/3LABnHA #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

The Looming Threat of Inaccessibility

Experiencing inaccessibility once can have you doubting other adventures and how they’ll play out. DeAnn Runge reflects in her latest vlog. Click here to watch our vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

This week on SMA News Today

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 #SMANewsToday #SMANews #SMAResearch #SMAAwareness #SMACommunity

The Role of Humor in Life With a Rare Disease

In his latest, Michael Morale shares the crucial role humor has played in life with SMA. Watch it here. Click here to watch our vlogs: https://bit.ly/3PWapMn. #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

This week on SMA News Today

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 #SMANewsToday #SMANews #SMAResearch #SMAAwareness #SMACommunity

A Failed Attempt at Accessibility

DeAnn Runge was looking forward to a summer excursion to a supposedly accessible beach — except there was one major problem. Watch here. Click here to watch our vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

This week on SMA News Today

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 #SMANewsToday #SMANews #SMAResearch #SMAAwareness #SMACommunity

Preparing for My Next Spinraza Injection

Will doctors use fluoroscopic guidance or CT guidance during Michael Morale’s next Spinraza injection? He discusses on the newest Morale Monologue episode. Click here to watch our vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Turning Frustration Into Fun With Help From the Jaco

In the latest from DeAnn Runge, she shows us how her Jaco helped turn a troublesome situation into an enjoyable weekend. Click here to check out our SMA Vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA

Why Asking for Help in School Isn’t a Weakness

In his latest, Michael Morale tackles the importance of asking for help in school, especially since such services are now available. Click to check out our SMA Vlogs: https://bit.ly/3PWapMn #SpinalMuscularAtrophy #SMAAwareness #SMACommunity #SMALife #LivingWithSMA