Lifetakesmuscle
STOP SMA FROM DOING THE SAME
The fight to improve the lives of those living with spinal muscular atrophy (SMA) spans decades—yet progressive muscle weakness remains a significant unmet need.1-3 Healthcare providers, advocacy groups, and researchers are striving to make meaningful progress. At the forefront of this journey lies the potential and the voices of those living with SMA. These individuals are the reason SMA is one of the most active areas of rare disease therapeutic development. Life Takes Muscle is the first muscle-focused disease education campaign in SMA; it highlights what lies ahead on this journey through the lens of those living with SMA, and those being treated for SMA. The community wants more!
Humans have over 600 muscles that directly or indirectly ensure our survival, help support essential physiologic functions, and allow us to fully engage with our family, friends, and society.4,5
But progressive muscle weakness—the clinical hallmark of SMA—continues to take essential motor function away from people with SMA.2,6
SMAshing Plateaus
The approval of SMN-targeted treatments has resulted in remarkable improvements in motor milestones7,8
Such therapies, combined with better respiratory support, improved nutrition, and physical therapy, have enabled people with SMA to live longer than ever.2 Further, the widespread adoption of SMA screening for newborns allows faster diagnosis and quicker access to treatment.9 The community has worked together to deliver these achievements; together, we can continue to advance care in SMA.
SMN: survival motor neuron.
Bear, 9
Living with SMA
On an approved SMN-targeted therapy for 8 years
The SMA community needs more.
A 2022 Cure SMA survey indicated that the SMA community continues to hope for additional improvement. Top priorities included gaining muscle strength, gaining new motor function, and improving activities of daily living, such as feeding oneself, toileting, and transfers.3,10,11 Almost everyone living with SMA has a variety of symptoms, many of which are caused by progressive muscle weakness.12 But SMA is unique. Within weakened muscles there are islands of intact muscle fibers.13 The presence of intact muscle14-16 provides strong rationale for exploring therapeutic approaches that target muscle.8
Researchers are responding to the call. They are exploring ways to address progressive muscle weakness with the goal of maintaining existing function or even gaining muscle strength. The hope is that new treatments can be found to help people living with SMA reduce fatigue, perform routine activities of daily living, and maintain their functional independence.8
The Life Takes Muscle Podcast
Join leading SMA expert Dr Diana Castro and her guests as they explore topics like the unmet need of addressing progressive muscle weakness, the untapped potential of people living with SMA, and the role of myostatin as an inhibitor of muscle growth.
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Life Takes Muscle is dedicated to the people living with SMA, their caregivers, their clinicians, and all those who help people living with SMA confront the ongoing impact of progressive muscle weakness in both physical movement and physiological function.