Spinal Muscular Atrophy Insights

This week's must-know community updates, latest research & events

Top Stories

Latest Research

In a study by Lee et al. (2025), researchers investigated the factors contributing to postprocedural pain in non-ambulatory patients with Spinal Muscular Atrophy (SMA) receiving nusinersen through repetitive intrathecal injections. The study, which was retrospective and conducted at a single center, involved 34 patients and a total of 290 procedures. It was found that nearly half of the procedures (49.3%) resulted in postprocedural pain.

Significant factors influencing this pain included the angle of the needle during the procedure, whether prophylactic pain control was used, and the number of CT scans performed. Specifically, the angle of the needle relative to vertical and horizontal lines was a key predictor of pain, with a beta coefficient indicating a clear statistical significance. These findings suggest that adjusting the needle angle and other procedural factors could reduce pain following nusinersen injections for SMA patients.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

Community News

Spinal Muscular Atrophy UKSpinal Muscular Atrophy UKMar 13, 2025

Here at SMA UK, we're delighted to share that thanks to Maxwell McKnight & Josh Wintersgill’s epic fundraiser #KnowNoBounds, the SMA Community will soon be able to hire an Extreme X8 off-road wheelchair for free! 🌍💙 Stelios Philanthropic Foundation

🔗 Read more and register your interest now! 👉 https://smauk.org.uk/ijbf

#KnowNoBounds#LimitlessAdventures

Spinal Muscular Atrophy UK Post
Cure SMACure SMAMar 13, 2025

In our new report to the FDA, “SMA community risk tolerance: Comparison of 2022 and 2017 SMA Risk/Benefit Survey Data,” we communicated important insights about how the risk tolerance of the SMA community has evolved following the increased availability of disease-modifying therapies.

Use the link below to learn more:

https://www.curesma.org/sma-community-risk-tolerance-update-comparison-of-2022-and-2017-sma-risk-benefit-survey-data/

Cure SMA Post
SpinalMuscularAtrophy.netSpinalMuscularAtrophy.netMar 17, 2025

"We chose to surround ourselves with people who support us and see us for who we are, rather than for our disabilities or abilities."

SpinalMuscularAtrophy.net Post

Upcoming Events

APR
12
Creative Arts Sessions for Siblings Spinal Muscular Atrophy UK • Stratford-upon-Avon, United Kingdom    Online
APR
26
Annual Arizona Evening of Hope Cure SMA • Elk Grove Village, IL    In Person