Today is World ALS Day. Since this is my (Gary Galerne) first post on here, I am going to make this very personal, because I think you deserve it.
If you’re here, you have an idea of what ALS is. If you don’t, a quick click through our website (The-Cause) or a Google search will tell you what it is and what it does.
What Wikipedia doesn’t tell you is what ALS does psychologically (or financially for that matter), to the people who are suffering from it, and to their friends and family. For the patient, every thing but your heart and brain are affected: people typically think that ALS attacks the brain in a way much like dementia does. However, that is not the case: the brain is untouched, but the nerve endings are. This means that you become a prisoner of your own body while being completely conscious of it: unable to speak, eat, walk, blink, and in the end…breathe. I watched my father go through this horrific process. I watched him tirelessly write notes to us on his iPad till his last day. He feared being in a wheelchair, but I feared the loss of communication. July of 2012 was the last time I heard his voice. Few things are sadder than the feeling of not being able to help, and then the crushing realization of inevitability.
World ALS Day is about awareness. It’s about getting the word out. So few people know what Lou Gehrig’s Disease is, it’s probably why some still joke about it. We think it’s clear that it’s no laughing matter. Today is another opportunity to broaden the knowledge of an audience the ALS community doesn’t yet have. It should be shared. And it should be thought of. World ALS Day will now be very dear and close to me, much like my father’s birthday is. Because ALS is considered a rare disease, this day means a lot to so few people. But all it takes is a “like”, a “share”, or talking about it with friends. ALS patients lose the ability to speak, but we still have ours! Dammit, we should SHOUT this out!
The PanAmerica isn’t about “avenging” my father’s unfair passing. It isn’t about a road trip. It isn’t about 4 best friends. It isn’t about hope. And it’s not even about my father. The PanAmerica is an idea. It’s a message. And it’s what we are capable of doing. We can avenge everyone who is affected by it. There CAN be a cure for ALS, so let’s DRIVE towards one together. And that is larger than us.