Weekly Spotlight - 21.11.24

Community

We want to hear your story!

Fill in the form to share your experiences and any challenges you’ve faced living with your condition, for a chance to be featured in one of our weekly newsletters!

Latest News

Switching from Spinraza to Zolgensma Shows Increased Treatment Benefits in SMA Patients

The article discusses the benefits of switching from the treatment Spinraza to Zolgensma for patients with spinal muscular atrophy. It highlights improved outcomes, such as better motor function and reduced hospitalizations, suggesting that this switch could be a more effective treatment option for SMA patients.

Precise Genetic Testing Key for Early Diagnosis in SMA Patients, Study Finds

A new study highlights the importance of accurate genetic testing for early diagnosis of spinal muscular atrophy (SMA). Precise genetic tests can identify the disease early, allowing for timely treatment and better outcomes for patients with SMA. Early diagnosis is crucial for effective management and intervention.

Advocating for Inclusive Representation in Media for SMA Community

The article encourages the spinal muscular atrophy (SMA) community to be more proactive and innovative in advocating for their needs, pushing beyond traditional boundaries to improve quality of life and access to care. It emphasizes the importance of bold action and community engagement in driving positive change for SMA patients.

Roche Marks 10 Years of Dedication to SMA Research and Treatment Advances

Roche has dedicated the past 10 years to researching spinal muscular atrophy, a genetic disorder that affects muscle strength and movement. Their commitment includes developing treatments, collaborating with patient groups, and advancing understanding of the disease to improve patient outcomes.

50 Children to Receive Free Lifelong Access to SMA Treatment Drug in Bangalore

Fifty children with spinal muscular atrophy (SMA) in Bangalore will receive free, lifelong access to a costly drug that helps manage the condition. This initiative aims to improve the quality of life for these children by providing them with essential treatment they might otherwise not afford.