Thank you for joining Cure SMA’s SMArt Moves Campaign newsletter. We are here to assist you. You’ll receive periodic updates on how you can help us save lives through early diagnosis and timely treatment of SMA.
If you have any questions, please contact [email protected].
For Parents: Trust Your Instincts
Remember, follow your instincts and don’t delay if you suspect a motor delay. We encourage you to take these next steps:
- Talk to your child’s doctor. Developmental delays may 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.
- 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.
- Red FlagsIf your child has suddenly developed any of the following signs, please contact your physician immediately:
- Regression: Lost the ability to do things he/she was previously able to do
- Rarely moves arms and legs (limited body movement)
- Seems excessively loose in the limbs, or floppy
- Poor head control
For Health Care Providers: Trust Your Instincts
The early diagnosis and treatment of SMA is essential to maximizing a child’s health outcomes from this debilitating disease.
Families and children with SMA often experience a significant diagnostic delay that overlaps with the period of greatest, motor neuron loss in these children. The days and weeks following the appearance of symptoms present the greatest opportunity for motor preservation and rescue.
If you suspect SMA in your patient, genetic testing is required to confirm diagnosis. Please contact [email protected] with any questions or concerns, or assistance locating a specialist near you. We are here to help!
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