Community Voices

Scroll down for a whole range of experiences and thoughts - from teenage reflections, to being a parent who has SMA, to hearing about animal companions. Our thanks to all our contributors.

If you would like to write for these pages, or send in a video clip or photos, please find out more here.

Our Great Community - All In This Together

Our Great Community - All In This Together

Tips and ideas for keeping entertained and positive if you’re having to socially-distance or isolate.

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.

Adult Reflections

Adult Reflections

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

Further Education

Further Education

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

Teenage Reflections

Teenage Reflections

Work experience, school, hobbies and life in general.

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.

Having SMA & Becoming a Parent

Having SMA & Becoming a Parent

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

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.

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.