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About Us

PURPOSE

Today, we are in the unique and exciting position to change families’ overall experience with an SMA diagnosis. We can begin to brighten the futures of so many families affected by SMA; saving and dramatically improving children’s lives through early diagnosis and access to effective treatment.

Through Cure SMA’s SMArt Moves we are determined to:

  • Improve families and health care professionals’ understanding of motor delays, especially around the importance of an SMA early diagnosis and early treatment.
  • Deliver helpful resources about the critical signs, the need for rapid action, and the life-saving benefits possible for so many children given access to swift and crucial treatments.

Our Smart Moves Mantra

  • There is new hope for young children diagnosed with SMA. Many infants and toddlers now have a fighting chance a life-saving, dramatically improved prognosis and quality of life thanks to a new, effective therapy and promising treatment developments on the horizon.
  • We want parents and healthcare professionals, especially pediatricians, to gain a heightened sense of urgency to address motor delays early and rule out a SMA diagnosis promptly.
  • Early diagnosis and early treatment of SMA can mean the difference between life and death, between extremely limited function and significant health challenges and increased independence and improved mobility.
  • Bottom line: access to life-saving treatment as early as possible is key, preferably within the first few months of noticing a child’s first SMA symptoms.

Cure SMA

Cure SMA is an organization dedicated to the treatment and cure of SMA (spinal muscular atrophy), the number one genetic cause of death for infants. We fund groundbreaking research and provide families the support they need today.

Developmental delays can be early signs of a serious medical condition. If you notice any loss in your child’s ability to do something she was able to do before or see any signs of motor delays, make an appointment with your child’s doctor immediately. Don’t delay.

Early recognition and diagnosis could mean earlier access to life-saving treatment options for your child. Talk to your pediatrician about your concerns. Remember to trust your instincts. Be persistent with your questions.

SMArt Move - Take this checklist with you to your child’s next doctor’s appointment to help guide your conversation and clearly articulate your concerns

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