News

The purpose of SMA Europe is to provide a framework to stimulate collaboration and accelerate translational research pathways in SMA and promote patient care.

  1. SMA My Way: stories on topics that matter most

    SMA My Way August is SMA Awareness month and to kick this off, we would like to showcase a great new, community-focused initiative called “SMA My Way“, which brings together the lived experiences of people across the world who live SMA THEIR way!

    This initiative was born as a result of a need highlighted by people living with SMA: that although there is a lot of information about SMA available, it can be hard to find community-generated but professionally-curated, first-hand experiences of how to conquer challenges and live independently with SMA. Created by the SMA My Way Champions (Toby Mildon and Martyn Sibley, UK; Flóra Béry-Januskó, Hungary; Pia Lemmetty, Finland and Karli Drew, Canada), some of whom are from our member organisations, with the support of Roche, the idea is for the whole SMA community to get involved by sharing experiences, tips and practical tools to empower others to live their life, their way, by sharing these on their own social media channels with the hashtag #SMAMyWay.

    SMA My Way Champions

    SMA My Way is an exciting new way for people to share life hacks that others may find useful. For example, it could be about how to talk about SMA to a colleague at work, how to master your make-up before a night out or how to help your child stay on track with their physio routine during a pandemic or about preparing your child for life away at university. Hear from others who share common experiences living with SMA and see their unique approaches to achieving life goals and celebrating individuality.

    SMA My Way

    The lived experience of SMA makes people living with SMA uniquely qualified at problem-solving and the wider we can spread the community’s messages of mutual support; the more people will benefit. Tips to create your very own life hack video are available here so get involved today using #SMAMyWay!

    For more information