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Last updated: 31st March 2023

A safe, supportive space for making new contacts and sharing experiences about life with SMA:

  • Open to anyone age 18 or over who is a parent, guardian or primary carer of someone who has SMA.
  • Once you join the group, others in the Network can see your mobile number.
  • Everyone is expected to follow our Network Guidelines – please make sure to read them.
  • Two parents of children with SMA, Amy and Becky, are part of the group. They monitor the chats and provide support, ideas and assistance.
  • Our Information, Support and Advocacy Team assists Amy and Becky to help with any information shared or questions asked.
  • If you have a private matter you want to discuss, please contact SMA UK’s Support and Outreach Team on 01789 267520 or email:
  • If anyone breaks the guidelines, they may be asked to leave the group.
  • If information is shared that causes concern, we may reach out to you directly, following our Safeguarding Policy.