Meeting People, Getting Involved & Campaigning
You may already know other people who have SMA – possibly have contact online or you’ve met face to face. Though they may not have lives quite like yours, you might have experiences in common that it’s good to be able to talk over and share tips and ideas about. But we know it’s not always easy to find people to be in touch with, as SMA is a rare condition.
You’ll also know that though society is much better than it was at including everyone and making sure there is access for all, we still have a long way to go. You may want to get involved with other like-minded people to talk about issues you’ve come across or heard about and you may want to join in with campaign activities.
This section includes ideas and options for how to make contact with others and get involved, if you wish:
Share Your Experiences / Speak Up For SMA
SMA UK has a number of opportunities for having contact with other people:
- This is the section of our website which explains what is on offer: www.smauk.org.uk/share-your-experiences
- This section may be of interest – teenagers talking about all sorts of things: www.smauk.org.uk/teenage-reflections
- This section is about people ‘Speaking up for SMA’: www.smauk.org.uk/speaking-up-for-sma
- If you want to get involved, fill out this form and click send: www.smauk.org.uk/share-experiences-aged-under-18
This is a good place to start if you want to get involved in campaigning. Trailblazers is a national network of around 700 young disabled people and their supporters, and is part of Muscular Dystrophy UK.
They campaign for change, provide guidance, and are experts in what life is like for young disabled people. They are committed to challenging the barriers in society that stop people from living full and independent lives: www.musculardystrophyuk.org/campaign-for-independent-living/trailblazers
Online SMA Communities
These have been set up by people in the SMA Community and some of them are for teenagers. You may already belong; if not, and you’re interested in any of them, talk to your parents about joining. Please make contact with the group / person directly: