Nearly two years ago I took part in the Ice Bucket Challenge, today I found out that the money raised ($115 million) has helped researchers identify a contributing gene, which in turn opens for the development of gene therapy treatment:
Well, I never thought this day would come: the day when I recorded a video and published it on the internet! But, what else can you do when you are challenged in the name of charity? So, my heart-felt thanks to Jeff Cavaliere of Athlean-X…here we go:
If you watched, then please take a moment to read this:
Those who know me will likely tell you that I’m not really the kind of person who does things like this, but they’ll probably also say that I’m not one to back out of an honest challenge. For some this challenge has been a fun and quirky way of gathering viewers and likes and shares, but it is so much more than that. I’m not doing this for me. Knowing that this video is now out there – forever – will eat away at me at times, but that silly discomfort is really nothing compared to what ALS does to a person.
Imagine having your body slowly turn on you, bit by bit becoming unreliable and eventually stop working, until the point where you can’t even breathe for yourself. No one can tell you why this is happening and no one can cure you. There’s really no hope; no way you can definitively get better. Sure, changing your diet may have a positive effect. Or it may not. It’s not really a question of if the disease will kill you, just when. And not before it has made you a prisoner in your own body.
We know very little about ALS, there’s no test that can be done to determine if you have it and there’s no telling who will get it and who won’t. Over 90% of those diagnosed seem to be completely random occurrences. Really the only way to determine if you do have ALS is to rule out everything else. Half of those diagnosed survive for 3 years or more – some go on to live for over 10 years. Only about 1 in 20 live with the disease for more than 20 years. There are medications available that can treat some of the symptoms and delay the deterioration, prolonging the patients life by several months. Months.
Every 90 minutes, someone somewhere receives the diagnosis.