SMA My Way

Sharing experiences of life with SMA My Way

By Flora, Martyn, Pia and Toby
Published 20 October 2020

Every person has their own individual experience of spinal muscular atrophy (SMA) and life goals to achieve, but many of the challenges we face are similar or the same. Through sharing our own lived experiences and “life hacks”, we can help others to overcome these hurdles and realise that achieving their dreams is possible.

That’s why we are partnering with Roche to develop an exciting new, community-focused programme called SMA My Way, a resource to help people living with SMA, parents and caregivers to live independent lives and learn from each other as a community.

You can watch this video to learn more about what we are hoping to achieve through SMA My Way or scroll down the page to see our own individual life hacks.

Over the next few months, we will be sharing the life hacks and top tips that make the biggest difference in our lives across a range of topics including managing through the COVID-19 pandemic, mental health and setting goals for the future.

The videos will be posted across Roche’s and our own social media channels so please feel free to like, share and comment when you see them.

It’s all part of the build up to the launch of our SMA My Way website in 2021 when the entire SMA community will have the chance to share their life hacks to create an ever-growing knowledge bank of SMA lived experience.

Watch this space!

Flora, Abris’s mum, talks about figuring out a way for Abris, who lives with SMA Type 1, to do physiotherapy during the COVID-19 pandemic

Martyn, who lives with SMA Type 2, shares how he manages to take his dog for a walk by attaching him to his wheelchair

Pia, Peppi’s mum, explains how a beanbag can give her daughter, who lives with SMA Type 2, the freedom to go canoeing with her family

Toby, who lives with SMA Type 2, discusses how smart home technology has revolutionised how he lives day-to-day

Tags: Patients, Neuroscience, Rare-disease