Newly Diagnosed?

If your child has been newly diagnosed with SMA, please read the below information. We know this is a confusing and overwhelming time. While there are not many choices with an SMA diagnosis, there are some. There is no one way or a right way and all decisions are difficult. The best action you can take is to inform yourself with as much information as you can so that you can make the best decisions for your family. If you have been given a Type 1 SMA diagnosis, time is critical. Nothing is guaranteed, but research shows the earlier intervention is made, the better chance of lengthening lifespan of the diagnosed.

• Journal of Child Neurology: Consensus Statement for Standard of Care for SMA - Family Guide
• Journal of Child Neurology: Consensus Statement for Standard of Care for SMA - Full Guide
• Journal of Child Neurology: Laparoscopic Nissen Fundoplication During Gastrostomy Tube Placement and Noninvasive Ventilation May Improve Survival in Type I and Severe Type II Spinal Muscular Atrophy
• FSMA: SMA Type 1 Caring Choices
• FSMA: Respiratory Care for Children with SMA
• University of Utah: Respiratory Care Video
• Gwendolyn's Machines
• Gwendolyn's Power and Backup Power
• Gwendolyn's Respiratory Routine
• Type 1 Wheelchair and Customizations

SMA Specialists >>

One of the most important decisions we made was to seek out SMA experts to help us in our decision making process. There are only a handful of doctors who specialize in children with SMA in the United States, but their knowledge and experience can change the outcome of your child’s life. Do not simply make an appointment for two or three months later – call or email doctors directly, immediately. If you cannot travel to see them in person, many are willing to work with your local hospital. The nuances of treating children with SMA are unique and often contrary to what is standard hospital protocol. It is important that you speak with them, be honest about what symptoms your child is presenting, and ask questions.

• Fight SMA: SMA Specialists Contact Information

Additional SMA Resources >>

• SMASpace
• Fight SMA
• Families of SMA
• InsideSMA
• SMA Medical Supply

Join >>

• International SMA Patient Registry to be eligible for latest clinical trials

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