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A fun, inclusive safe space for you to chat with people your own age about your experiences, make new friends and learn from each other.

  • Open to anyone aged 13-17 years old who has a diagnosis of SMA.
  • You must have your parent / guardian’s consent that you can join the group.
  • Once you join the group, others in the Network can see your mobile number.
  • Everyone is expected to be respectful and kind and follow our Network Guidelines – please make sure to read them.
  • Two young adults, Jordanne and Maxwell, who have lived experience of SMA are part of the group. They monitor the chats and provide support, ideas and assistance.
  • Becci, one of SMA UK’s Outreach Workers, assists Jordanne and Maxwell, and is there to help with any information shared or questions asked. Becci may also ask other members of SMA UK’s Information, Support and Advocacy Team to help answer any questions.
  • As well as always being there for a chat, there are regular ‘meetings’ about particular topics that the group would like to focus on.
  • Another option is meeting up virtually at least once every four months or so just for a social time – maybe to play games etc.
  • If anyone breaks the guidelines, they may be asked to leave the group.
  • If you want to talk privately, you can contact Jordanne, Maxwell or Becci directly – you will have their contact details once you join the group.
  • If information is shared that causes concern, we may reach out to you and / or your parents / guardian directly, following our Safeguarding Policy.