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Living With SMA

In these pages, you'll find a wide range of information, tips and suggestions to support you in your day-to-day life.

Route Maps

Route Maps

These cover a range of topics from equipment and health, to starting school, access to work, housing adaptations, financial support and more. They're currently organised by Type of SMA, but we are working to make them more accessible.

Toys, Play & Activities for Babies and Young Children who have SMA

Toys, Play & Activities for Babies and Young Children who have SMA

This guide gives practical tips and suggestions for safe and supportive play for different ages and stages, including ideas shared by parents of children who have SMA.

Leisure Activities for Children and Young People with SMA

Leisure Activities for Children and Young People with SMA

This covers information and contact details about many organisations that enable people with disabilities, including SMA, to participate in leisure activities. Most are national, but you can contact them to find out about clubs or activities local to you.

Care and Support – Sharing Experiences

Care and Support – Sharing Experiences

In April 2018, a group of people affected by SMA got together to share their experiences of care and support and raised some questions. This summarises what they said, along with a follow-up of answers and links to information and resources.

Future Options in Pregnancy

Future Options in Pregnancy

If you are affected in some way by SMA and are thinking of having children, or you or your partner are currently pregnant, there are a number of options that may be available to you.

Protection for the Future - A Guide to Trusts and Wills

Protection for the Future - A Guide to Trusts and Wills

We're often asked for advice about protecting children's, young people's and adults' financial futures. This leaflet gives a brief introduction to trusts, wills, and powers of attorney.

Wish Granting Charities

Wish Granting Charities

This leaflet lists some of the charities which offer special treats or holidays for children and young adults who are very ill or who are living with severe disabilities.

Bereavement

Bereavement

Nusinersen treatment and the possibility of other future treatments has brought great hope to many, but the most severe forms of SMA can still be life-threatening. These pages may help those who, sadly, are facing bereavement or who are bereaved.

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 of Terms

Glossary of Terms

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.