A challenge to save lives
Yan Défossé, father of Liam, a young boy afflicted with the disease launched the “Tiktok SMA challenge”. In short, SMA is a degenerative neuromuscular disease that causes muscles to get weak, shrink or even die. Fortunately for Liam, who is in Quebec, he is receiving a treatment that stops the progression of SMA. Unfortunately, the same treatment is not available in all provinces, so some people have access and others do not, because Canada does not have a national strategy for rare diseases. Even though the disease is fatal and relentless many are left out without the only treatment that can stop the degeneration. The “Tiktok SMA Challenge” was created to gather as many signatures as possible for the Not So Rare petition which calls for a national rare disease strategy. Yan and Liam also invite you to participate in a fun video challenge to raise awareness about rare diseases. Here is how to do it!
Take part in a fun video contest
For Liam, who is now 8 years old, every small daily activity is difficult. SMA affects all the muscles we use to walk, move our arms, sit, eat and breathe. For Liam, lifting the weight of his arm to scratch his eyes or nose is a challenge. So if you are part of the SMA community or have a rare disease we invite you to submit a video of one of your daily achievements! If you are in great health, we invite you to show us your maximum strength! Imagine the gestures and movements that you normally do, but with a capacity of 10 or 20% of your muscles. For example your favorite chocolate bar will suddenly weigh 5 Kg. Show us elegantly or not, your maximum load. Be creative and daring, use what you find so that everything becomes heavy, even too heavy.
How to participate:
- Shoot a short video: for people with SMA or rare diseases show us your daily activities, for healthy people show us your maximum strength… And have fun
- Share on your social networks with the #TiktokSMAchallenge
- Follow the challenge on social media here: https://www.facebook.com/yan.SMA.defosse
Sign the petition, for fair access to new treatments
It is legitimate to ask this question, how is it possible that a child like Liam can access an effective treatment for SMA in Quebec, while another child just like him in another province cannot? The answer lies in the fact that Canada is one of the few industrialized countries without a rare disease strategy. This lack of strategy and policies means that we are forced into an ineffective federal-provincial dual system for drug marketing approval and reimbursement of orphan drug costs. In the case of SMA, the disease progresses quickly and everyone should be able to have equitable access to treatment that slows it down. Take part in the Tiktok SMA challenge, signing this petition and or submitting your video is a step towards a fair health system for all people with SMA.
“In a country where we are all supposed to be equal, this is unthinkable –
Yan Défossé, father of Liam and instigator of the challenge
TOGETHER, LET’S TAKE THE FIRST STEP TOWARDS A SOLUTION