I’m sure that in the past few months your news feed has been flooded with the Ice Bucket Challenge. It probably even got to the point where you couldn’t stand seeing it anymore, maybe even resent the whole concept. Why do you care about ALS, it hasn’t affected anyone you know….yet.
You’re probably right. According to the ALS Association, only about 30,000 people have ALS right now – that’s 2 in every 100,000. We all feel the need to support those causes that affect us, or that are mainstream, like Parkinson’s disease, breast cancer, leukemia, and whatever else that comes across the TV or our radio, but why not ALS. ALS doesn’t have that famous spokesperson like Michael J. Fox or Muhammad Ali. It doesn’t have billions of dollars funneled into research, and honestly, how does a bucket of ice help the cause?
I can’t answer those questions, but imagine this. You are completely tied up and your mouth is taped shut. You are in your house and some stranger is taking all your things, one by one. You know what is happening, but there is nothing you can do about it. That is ALS. Sufferers become a prisoner in their own body, fully aware of what is happening, but without the means to do anything about it.
There are so many ways that ALS occurs. The onset is not necessarily genetic, only 5-10% of cases are due to inheritance. Instead, your body mutates on you, changing a gene that then causes the most intense traffic jam of transmitters inside your brain and spinal cord. Research is difficult because once that mutation occurs there are so many different ways that ALS affects you, that stopping just one doesn’t fix the problem. Imagine the worst traffic jam in the largest city. All the cars don’t come from in same direction; they converge into one central location. Opening up one of the pathways does not ease the flow for a different route; in fact it may hinder it. This is what ALS does inside the nervous system, except there is no way to clear the overload.
Pharmaceutical companies have the difficult task of trying to develop drugs to alleviate this problem, only for them there are other problems as well. Our brains are very protected in our body. The ability for drugs to enter our brain is very, very limited. While this is great for a healthy brain, it makes the task virtually impossible for those that are affected. So far there has been one drug that has been able to extend the life for those affected with ALS for a whopping 5 months. Yup, that’s right, less than half a year.
So the next time you see an ICE bucket challenge show up on your news feed, don’t get upset or frustrated. Think of the two in every 100,000 that are trapped inside their own body, fully aware, but unable to let you know. Become the voice for those that don’t have a voice for themselves, and help become part of a cure.
ALS – We Need to Care
