SMA Voices Guidelines

Families and individuals tell us that it can be really helpful to read about the experiences of others who have faced similar times. This provides them with inspiration and ideas. 

Our SMA Voices pages are divided into the following sections:

  • Out and About and Leisure Time - sport, driving and travel to name a few of the experiences described here by children, young people, adults and families.
     
  • Adult Reflections - living independently, working, travelling, looking back on life to date.
     
  • Further Education - college, university, degrees and PhDs; some of the choices people have made.
     
  • Animal Companions - from assistance dogs to pampered pets, people share here what their furry friends and animal companions mean to them, and the role they play in their lives.
     
  • Teenage Reflections - work experience, school, hobbies and life in general.
     
  • Parents and grandparents of children who have SMA Type 2 or 3 share their experiences around topics such as equipment, education and spinal surgery, here.
     
  • Having SMA and becoming a Parent - the journeys that have led to this new chapter of life.
  • Speaking Up For SMAadults with SMA share their experiences of Speaking Up For SMA, such as at an information, social, or Parliamentary event.

  • Parents whose babies were diagnosed with SMA Type 1 since 2011 and did not access drug treatments, talk about their experiences of diagnosis and care, here.
     
  • Parents whose child was, or has been, diagnosed with SMARD1 talk about their experiences of getting a diagnosis and caring for their child, here.

There are also bereavement and memories pages.

We are keen to hear from anyone who would like to contribute their experiences to these pages. Most people put something in writing with photos, but we are also occasionally able to publish a film clip.

As we are signed up to the Information Standard, we have to take particular care to ensure that anything we publish contains accurate up-to-date information about SMA and does not refer to controversial treatments or research. We are also careful not to publish any negative statements about any individuals or organisations or mention names of anyone who has not already agreed to be included in the piece.

We always let people know via social media and our monthly E-newsletter when we publish a new SMA Voices.

If you would like to share your experiences on these pages, please phone our Shared Experience 
Co-ordinator on 01789 267 520, complete the form here
or email your story to sharedexperience@smauk.org.uk