Spinal Muscular Atrophy

Educational Resources for Parents and Families

You are here because you were told your child (or a child of someone close to you) has a newborn positive screening result for spinal muscular atrophy.

This website will help you understand SMA, the next steps, and how to talk with your healthcare team to make the best choices for your child. Please know there is hope and you are not alone.

You may have never heard of spinal muscular atrophy (also called SMA) before. This news can be shocking and frightening. And it can be confusing since your baby looks well and the next steps are uncertain. We know this is a difficult time and the emotions you are going through are normal given such an unexpected situation. While SMA is a serious disease if left untreated, treatments are available.

Some information online may not be up to date and relevant to you and your child. In order to make sure the information here is relevant for you, Australian and New Zealand families who have been through this, alongside experts, have made this website for you.