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We often contact young people turning 18, who have SMA, so you can see if any of the services we offer might be of interest – take a look at the list below and follow the links for further information.

We regularly post about access to treatments, campaigns and surveys, people’s stories and podcasts, as well as any social and fundraising events, on:


Facebook: @SpinalMuscularAtrophyUK

Twitter: @SMA_UK_ 

Instagram: @sma_uk

YouTube: @SpinalMuscularAtrophyUK

We pick up on the main updates in our monthly E-News which a lot of people find really useful. We also have a twice-yearly magazine called ‘SMA Matters’. Sign up for mailings here.

You can browse through our information about Living With SMA. There are all sorts in here in the Teenager and Adult sections that might be of interest, including Access to Work, going to uni, and learning to drive.

You might like to listen to / watch our videos and podcasts many of which are chats with people living in the SMA Community – or read what people have to say in our Community Voices. If these inspire you and you would like to be part of a recording or write about your experiences, it would be great to hear from you:

This will connect you up with other people in our Young Adults’ and Adults’ Networks – you may well find you know some who are members already.

Find out more >

To find out more about what events we’re planning and when, please see this page.

If you’re grappling with an issue, our Support & Outreach Team may be able to help. Read more about the Team and how to get in touch, here.

If you enjoy reading and have a critical eye, you might want to become one of our information reviewers – especially for topics in Living With SMA that you’ve experienced and where you’d like to contribute. If you’d like to get involved in this, please email:

If this appeals, or you have fundraising ideas, the Fundraising Team would love to hear from you! Have a browse here to see what they’re up to at the moment and how you can get involved.

If you’re interested in how SMA UK is run and would like to contribute ideas about how we can best meet the needs of people in the SMA Community, have a look at these pages.

When your family first contacted us, we set up a record of your family address, phone and email details and, since then, brief details of the contact we’ve had with you / your family. We wanted to let you know you’re included on this record.

If you want to know more about how we look after your information, this is all here.