At Cure SMA, we’re committed to making sure that families have the best, most accurate information about SMA and what it means for them, from day-to-day care to the changing landscape of research breakthroughs.
In 2007, the Journal of Child Neurology published the “Consensus Statement for Standard of Care in Spinal Muscular Atrophy” and the “Family Guide to Consensus Statement for Standard of Care in Spinal Muscular Atrophy.” These documents established general guidelines for the management of SMA.
Cure SMA's resources on medical issues build on these important statements. Each of the following pages provides a summary of one of the most crucial medical issues for those with SMA.
- Palliative addresses many of the most common questions and concerns surrounding palliative care.
- Breathing discusses the respiratory issues that individuals with SMA may face, and details invasive and non-invasive options for ventilation.
- Orthopedics explains potential musculoskeletal complications, and how an interdisciplinary team can prevent or treat these for all types of SMA.
- Nutrition covers overnutrition, undernutrition, GERD, aspiration, feeding tubes, and other topics that families affected by SMA need to know about.
- Equipment focuses on the specialized equipment that individuals with SMA may use for breathing, mobility, or assistance with activities of daily living. Our equipment pool gives families access to specialized items like car beds, strollers and bathing systems at no cost.
In addition, our care series booklets provide in-depth information on medical issues. To see a complete list of our care series booklets, please visit our support and care publications page.