SMA Voices

Our thanks to all who have shared their personal experiences.

If you would like to write for these pages, please do get in touch here.

Parents who have cared for their infants diagnosed with SMA Type 1

Parents who have cared for their infants diagnosed with SMA Type 1

Shared since 2011, parents whose babies didn't access drug treatment reflect on their experiences.

Parents & Grandparents of Children who have SMA Type 2 or 3

Parents & Grandparents of Children who have SMA Type 2 or 3

Equipment, education and spinal surgery are some of the topics discussed.

Further Education

Further Education

College, university, degrees and PhDs - some of the choices people have made.

Out and About and Leisure Time

Out and About and Leisure Time

Sport, driving, travel to name a few of the experiences described here by children, young people, adults and families.

Teenage Reflections

Teenage Reflections

Work experience, school, hobbies and life in general.

Adult Reflections

Adult Reflections

Living independently, working, travelling, looking back on life to date.

Having SMA & Becoming a Parent

Having SMA & Becoming a Parent

The journeys that have led to this new chapter of life.

SMARD 1

SMARD 1

Families talk about their experiences of getting a diagnosis and caring for their child.

Bereavement and Memories

Bereavement and Memories

You can read families' experiences of grief and how they cope with bereavement, as well as people's personal tributes and memories of those they love.

SMA Voices Guidelines

SMA Voices Guidelines

We are keen to hear from anyone who would like to contribute their experiences to these pages.