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It is important SMA UK is a forward thinking, modern and agile charity, that can be trusted and recognised as the lead voice for all people living with SMA.

Representing all people living with and affected by SMA, we are acutely aware that we need to find new ways to listen to, engage with and understand what the key priorities are from the perspectives of both families and adults living with SMA.

With paediatric SMA currently in the media spotlight, we need to ensure the priorities of the adult community are heard. Therefore, to ensure this happens we are forming a working group of adults living with SMA to give the SMA Community a platform to share insights and opinions that can be amplified by us as an organisation to make real and meaningful change.


Led by our Head of Advocacy and Community, Portia Thorman, Community Engagement Coordinator, Gary Edgecombe and facilitated by social entrepreneur living with SMA, Martyn Sibley, the voices we hear throughout the working group will shape and add weight to the SMA Care UK project and furthermore, will inform SMA UK’s long and short term strategic planning.

Stories, experiences and opinions will be shared with our partner organisations to ensure that voices will be heard alongside the voices of other larger disability focused groups at both government and local level across all four nations.

There may also be opportunities for some members of this working group to go, in person or virtually, to share their experiences with parliamentarians, academics, clinicians and pharmaceutical companies to identify barriers, raise awareness and highlight the lack of support currently being provided.

The working group will be on a voluntary basis and will be an open, honest and future focused space to discuss controversial topics and create solutions together.