Test Calendar for Madano

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AUG 03

“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

AUG 04

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

AUG 05

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!

AUG 06

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

AUG 07

What actually causes SMA?

Behind today’s door, you will find an animation illustrating the underlying genetic cause of SMA

AUG 10

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

AUG 11

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!

AUG 12

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!

AUG 13

Introducing Evrysdi!

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!

AUG 14

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

AUG 17

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

AUG 18

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

AUG 19

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

AUG 20

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

AUG 21

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

AUG 24

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!

AUG 25

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

AUG 26

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

AUG 27

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!

AUG 28

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.

AUG 31

Quiz!

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!