ARSLA is the 1st french association who's fighting against the Amyotophic Lateral Sclerosis ( ALS ) also known as Lou Gehrig's disease. ( We tell you more about this neuro-degenerative disease without any cure in the next part )
Association has been created by a common idea between one patient and his neurologist in front of this urgent situation due to this disease which is still in the shade : urgency of treatment, urgency of better diagnostic, urgency of better nursing, financing and more informations. It's to help people who are attack by this disease which you can do nothing that ARSLA is born : together, be solid to find a solution as quickly as possible
30 years later it's sill a reality, a necessity
- 1 goal, 2 missions -
- Numbers -
"Oh yeah, i've heard about it".
ALS, Amyotrophic Lateral Sclerosis, is an unknown disease, that only few people are able to describe. It's part of subject that we prefer avoid to talk about, one the disease who should not exist.
Maybe you know it known as « Maladie de Charcot » (Name of the scientist who discovered it in 1865). In USA / Canada it's known as Lou Gehrig's disease , famous baseball player dead in 1941. But it will more demonstrative to quote the surprising exemple of the famous Stephen Hawking, this brilliant astrophysicist who lived 52 years with this disease despite the poor chance of surviving.
ALS is a neuro degenerative disease wich we still don't know her origin. and at this time got any solution to be cured. The process is complex, but we could try to explain simply saying that the ALS is the " progressive death " of the neurons who control and steer the muscle.
ALS presents as progressive paralysis. She affect also the phonation and swallowing. One essential characteristic of ALS is apart from motor function she doesn't attack the nervous system. Your body is dying but your brain is 100% in good health.
It's kind of disease with somber pronostic and the end is tragic after 3 of 5 years of evolution ( on average ) . Evolution is progressive but unpredictable. By the huge handicap she create and the fatality induced, ALS is an ordeal for the patient and the close family.
150 after the discovery, ALS still don't get any treatment !
Only the "Riluzole" seems to be efficient to slow down evolution. Others treatment has been tried, without success. But the research are very dynamic and new treatment are always testing.
Like the 6000 patients in France and the 150 000 in the world, plus close family, we are part of people touched by this disease. My mother [Delphine] died at 49 years old by lightning form of ALS, the process took only few month instead of few years.
Because we didn't know cette maladie until this time, because patient and family deserve to be support, to anybody feel alone in front of this fatality and specially to don't become a fatality we want to help ARSLA wich support people who are suffering and the research.
Give to ARSLA the notoriety that patients deserve to develop our ressources which are insufficient for this challenge.
What if we raise funds with an original way ?
We both grew up in sport's environment, we always love challenges, those you need to push your limits and teach you with work some things are possible. It with this conviction and the desire to help who gave rise to our project : a sport challenge done in all the world.
" Bring Sally up , bring Sally down ... "
At first glance just lyrics from a simple song of Moby, but when we add some fitness movement to realize in rhythm it become harder, even more when those movements are squat and push-up ! The aim is simple : the music starts, let's go. "Up", we go up "down", we go down ! At this moment it's us against 3m30, it's the fight against ALS : it's our body against the time
Stop talking, let's show you exemple below !
OK but in concrete, how it works ?
You are the players !
Affected directly or indirectly but this disease, convinced by this project, just a desire to help us... Doesn't matter your motivation and the amount you would give, we thank you in advance for your generosity.
Still a lot of challenge to rise before victory. That's why, more than ever, we need your support because without you we couldn't achieve our goals.