Recently Diagnosed With SMA

Receiving a diagnosis of SMA often comes as a shock and can be very difficult for everyone involved.

We hope you will find a guide here that will help as a starting place for information and suggestions. They draw on the International Standards of Care for SMA (2017) and the experiences of families and adults affected by the condition. 

Looking After Your Child Who Has SMA Type 1

Looking After Your Child Who Has SMA Type 1

This guide talks about the practical side of caring for your child, combining healthcare information with tips and suggestions that have worked for other families.

Looking After Your Child Who Has SMA Type 2

Looking After Your Child Who Has SMA Type 2

This guide talks about the practical side of caring for your child combining healthcare information with tips and suggestions that have worked for other families.

Toys, Play & Activities for Babies and Young Children who have Spinal Muscular Atrophy

Toys, Play & Activities for Babies and Young Children who have Spinal Muscular Atrophy

On the Living With SMA section of our website, you can read practical tips and suggestions for safe and supportive play for different ages and stages, including ideas shared by parents of children who have SMA.

Looking After Your Child Who Has SMA Type 3

Looking After Your Child Who Has SMA Type 3

This guide talks about the practical side of caring for your child combining healthcare information with tips and suggestions that have worked for other families.

Nusinersen (Spinraza) Treatment Information Leaflets

Nusinersen (Spinraza) Treatment Information Leaflets

These aim to provide a summary for anyone affected by SMA Types 1, 2 or 3 who's considering the possibility of treatment with nusinersen for their child, or themselves. They're intended to be used in your discussions with you / your child's medical team.

Looking After Yourself If You Have Adult Onset SMA

Looking After Yourself If You Have Adult Onset SMA

This guide includes: getting a diagnosis; posture, movement and exercise; diet and breathing; fatigue and pain; support and resources.

Who's Who of Professionals

Who's Who of Professionals

Over time, you are likely to have contact with a number of different health, education and social care professionals. This lists many of them and the teams you might meet, with a brief description of what they do.

Glossary

Glossary

SMA is a complex medical condition. You may come across new words and terms. This may be a helpful mini 'dictionary' for when you are unsure of what they mean.