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“Challenging the Impossible” with Eddie Ndopu
At the age of two, Eddie Ndopu was diagnosed with SMA. Ever since, he has aspired to “challenge the impossible” and live life to the fullest. Please enjoy his inspirational story
Introduction to SMA
Check out this short video to find out what SMA is and the differences between the three main types of the disease
How many people are affected by SMA?
SMA is classified as a rare disease, but have you ever wondered how many people it affects around the world? Learn more here!
Understanding living with SMA, with Martyn Sibley
Make sure to click on today’s video! Martyn Sibley, who has SMA, explains the importance of increasing understanding that people with SMA can live full, independent lives
What actually causes SMA?
Behind today’s door, you will find an animation illustrating the underlying genetic cause of SMA
Introduction to risdiplam with Jean-Paul Pfefen
Watch today’s video, where Global Development Leader for risdiplam, Jean-Paul Pfefen, provides an overview of our clinical studies
Risdiplam clinical trial fish tank
Now you’ve been introduced to risdiplam, why not find out more about the clinical trials? Check out this animated fish tank and make sure your sound is on!
Risdiplam data highlights
Following yesterday’s overview of the clinical trials, we bet you want to know the latest data. Take a look at this colourful infographic and make sure to click the video thumbnail to hear from Principal Investigator of the FIREFISH trial, Laurent Servais!
We hope you’ve come to see that risdiplam is important because it aims to make a difference for every patient at every moment of every day. With that, we’d like to show you this short animation to introduce risdiplam’s brand name, Evrysdi!
Introduction to our pre-approval access/compassionate use programme
Accelerating access to risdiplam is one of our main priorities, which is why we set up the pre-approval access/compassionate use programme last year. Watch the video to find out how far we’ve come since then
Introduction to living with SMA, with Fani Petridis
Watch this video to hear from Global Patient Partnership Director for the SMA programme, Fani Petridis, and this week’s focus of sharing inspirational stories of people with SMA
Living with SMA, with Faye Pearson
Check out Faye’s story as she describes how being able to drive a car allows her to remain independent
Living with SMA, with Lorraine
Today, we hear Lorraine’s incredible story of how she conquered her dream of having a family, as the first person with Type 2 SMA in the UK to become a mum
Living with SMA, with Marni
Make sure to watch Marni’s story today, we know you’ll also be inspired by her attitude to not let SMA get in the way of achieving what you want to achieve
Living with SMA, with Ross
Don’t miss out on Ross’ story today (particularly for the football fans out there), where he explains that every challenge can be overcome with a bit of planning
Hope for the future, with your colleagues
We’ve got a great video to share today! All around the world, we asked colleagues working in SMA what their hope for the future is. Be sure to check it out!
Hope for the future, with Victoria Gusset
Here we explore what it’s like to live with SMA from the perspective of nine-year-old, Victoria. Watch until the end to hear what her hope is for the future
Hope for the future, with Martyn Sibley
Do you remember Martyn Sibley from the first week of the calendar? Well, he’s back to tell you his hope for the future of his disease
Thank you, with Christine & Morgan
Open today’s calendar door to receive a message from the minds behind this calendar, Christine and Morgan. Make sure to listen carefully to find out how you can be in with a chance to win an exciting prize!
SMA My Way Teaser Trailer
To round off our week looking at the future of SMA, Morgan mentioned in the previous video to keep an eye out for the launch of the SMA My Way hub – an online portal for people with SMA to share life hacks and tips about how to live independently. Check out the teaser trailer above and hear from the people involved about why they are passionate about this programme.
Here we are, at the end of the SMA Awareness Month calendar. Now is your chance to show off your knowledge by taking part in the end of month quiz. Don’t forget, anyone who scores 90% and over will be entered into a draw to receive an exciting prize. Good luck!