SMA UK Services

Support and Outreach

Though we hope our website has answered a lot of your questions, there’s nothing quite like being able to talk things through with someone. You’ll hopefully already have adults around you who you feel comfortable talking to - like your parents, someone at school, or maybe a member of your healthcare team. 

Although we don’t provide a medical service or medical advice (which must always come from your medical team) if you or anyone in your family has questions or wants to talk things through, you or they can also contact us. At SMA UK we’re a small team who’ve been supporting families with young people with SMA for many years. We can be in touch by phone or Email, or perhaps visit you and your family at home. We're able to listen and suggest options, and can share ideas about what other young people have done and how. As you’re under 18, we need to ask for your parent’s / guardian’s permission to support you. Sometimes we may also suggest other organisations or groups which might be able to offer you information and support; it’s entirely up to you if you want to look into any of these.

Contact Us: Teenagers’ Request for Support and Outreach:

Make Contact With our Young Adults Network

Though we hope you have got some ideas from reading the information, tips and experiences on our website, you might want to find out more from people who’ve ‘been there, done that’. With your parent / guardian’s permission, we can put you in touch with young adults (aged between 18 and 25 years) from our Network, who are willing to share their experiences about things such as learning to drive, going to university, festival going, travelling, to name a few.

One teenager who made contact with some of the young adults from the network says:

"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." 

Contact Us: Teenagers’ Request for Contact with Other Young Adults -

Page last reviewed / updated: March 2021 
Next review due: March 2022