Weekly Spotlight - 27.11.24

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Latest News

Cure SMA Foundation Celebrates Funding for Rare Disease Treatments

The Cure SMA Foundation in India applauds the government's Rs 900 crore allocation for rare disease treatments, including Spinal Muscular Atrophy(SMA). This funding aims to improve access to life-saving therapies. Collaboration among stakeholders is crucial for timely implementation, ensuring SMA patients receive necessary care and support across India. 

SMA Research Reveals Broader Neuronal Impact Than Previously Known

New research reveals that severe infantile spinal muscular atrophy (SMA) affects more neurons than previously thought. The study highlights significant damage to thoracic ventral horn neurons, challenging old beliefs. This broader understanding could improve current therapies and inspire new treatments, offering hope for those affected by SMA. 

Biohaven's SMA Drug Shows Potential for Obesity Treatment

Biohaven's drug for spinal muscular atrophy did not improve motor function in trials, but showed potential in reducing body fat and increasing muscle mass. Analysts see promise for obesity treatment. Biohaven plans further studies, offering hope for new therapeutic avenues. Shares rose 3% following the announcement. 

Cure SMA Event Celebrates Advocacy and Legislative Champions

Cure SMA's Hope on the Hill event celebrated advocacy achievements and recognised congressional champions. Key figures discussed legislative progress for SMA research and accessibility. Personal stories highlighted the impact of advocacy on air travel and caregiving. The event raised over £2 million for SMA research, underscoring community support and hope for future breakthroughs.