Join others across the UK aged 18+ years in this safe space, make new friends and contacts, learn from one another’s experiences, and generally just catch up and have a chat!

Last updated: 31st March 2023

• Open to anyone aged 18+ years old who has a diagnosis of SMA. (If you have SMA and are aged between 18-30, then you may also / instead be interested in joining our Young Adults’ Network – please see the tab below).
• 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.
• Steven Jones, an adult who has lived experience of SMA, is part of the group. He monitors the chats and provides support, ideas and assistance.
• Our Community Engagement Team (Portia, Gary and Luis) assists Steven to help with any information shared or questions asked.
• As well as always being there for a chat, the group may decide to organise a time for a virtual ‘meeting’ to catch up and chat over a topic of just have a social time.
• If anyone breaks the guidelines, they may be asked to leave the group.
• If you want to talk privately, you can contact Steven directly – you will have his contact details once you join the group.
• If information is shared that causes concern, we may reach out to you directly, following our Safeguarding Policy.

Join the Adults’ WhatsApp Network >

A warm welcome to any parent, guardian, or primary carer who would like to chat in a safe space with other families in the UK SMA Community and learn from each other’s experiences.

Two parent moderators – Amy and Becky (who both have children with SMA) – provide support and assistance and ensure the group runs smoothly and safely. Read more about Amy and Becky here.

Amy or Becky may call on members of our Information, Support and Advocacy Team to help with any information shared or questions asked.

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

Last updated: 31st March 2023

• 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: office@smauk.org.uk
• 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.

Join the Families’ WhatsApp Network  >

Join other grandparents of those who have SMA, across the UK, in this safe space, make new friends and contacts, learn from one another’s experiences, and generally just catch up and have a chat!

Last updated: 12th April 2024

• Open to anyone who is a grandparent of someone who has a diagnosis of 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.
• Jackie Ilott, a grandparent who has lived family experience of SMA, is part of the group. She monitors the chats and provides support, ideas and assistance.
• Our Community Engagement Team (Portia, Gary and Luis) assists Jackie to help with any information shared or questions asked.
• As well as always being there for a chat, the group may decide to organise a time for a virtual ‘meeting’ to catch up and chat over a topic of just have a social time.
• If anyone breaks the guidelines, they may be asked to leave the group.
• If you want to talk privately, you can contact Jackie directly – you will have her contact details once you join the group.
• If information is shared that causes concern, we may reach out to you directly, following our Safeguarding Policy.

Join the Grandparents’ WhatsApp Network >

Join others across the UK aged 13-17 years in this fun, inclusive safe space, make new friends, learn from one another’s experiences, chat, and most of all have fun!

What some of the young people on the network say:

“I like the SMA group as it is a way for me to talk to people that have experienced the same situations I have – it makes me feel less alone.”

“The group is great because you can say anything that’s on your mind, and often you find that other people have had similar experiences.”

“The main thing I like about the group is that you’re basically talking to a bunch of people in very similar situations, so there isn’t the fear that you’re going to be judged.”

We’d love you to join us, just click on the link below, fill out your contact details – including ones for your parent / guardian – and we will be back in touch asap.

• 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.

Join the ChariSMA Network >

Join others across the UK aged 18-30 years in this safe space, make new friends and contacts, learn from one another’s experiences, and generally just catch up and have a chat!

One user has said:

"I feel so much more reassured about Uni, driving and my future in general. They all make me feel very inspired! I would urge anyone to try to have contacts with other people with SMA. Seeing as it isn’t that common and you don’t regularly have contact with anyone else with the disability, it can at times feel isolating. However, with these contacts I feel like I have ‘mentors’ who truly understand and want to help me, which is liberating on a physical and psychological level."

Last updated: 31st March 2023

• Open to anyone aged 18-30 years old who has a diagnosis of 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 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.
• Our Information, Support and Advocacy Team assists Maxwell and Jordanne to help with any information shared or questions asked.
• As well as always being there for a chat, the group may decide to organise a time for a virtual ‘meeting’ to catch up and chat over a topic of just have a social time.
• If anyone breaks the guidelines, they may be asked to leave the group.
• If you want to talk privately, you can contact Jordanne or Maxwell 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 directly, following our Safeguarding Policy.

Join the Young Adults’ WhatsApp Network >