Almost a year ago we met here. It was the first often awesome benefit show in the first time I really felt the full effect of the warmth of the community. I still can’t quite describe the feeling, but I remember feeling wholly undeserved of such goodwill. I had a hard time imagining what I had done in my life that merited the positive energy surrounding me. For someone who had just been diagnosed with a terminal disease, I was one happy motherfucker.

And oh what a night it was. There was great music, great friends, and the easiest opportunity to have my new band play in front of hundreds of people. I still feel my spirits buoyed by that night and the high that I felt which had nothing to do with the weed I smoked or the beer I drank I still feel today.

But here’s the harsh reality. Last year I walked up on the stage and I played my heart out. In a years time much has been taken from me. I can no longer walk. I can no longer play music of any kind. If I try to sing I don’t have the breath to support it. In fact there’s almost nothing I can do without having other people do it for me. I can’t bathe myself. I spend my entire life either in a wheelchair or hospital bed but have no ability to transfer from one to the other without what is essentially a human crane. I piss in the plastic urinal bottles or use a catheter and I shit into a bedside commode. I can’t even wipe my own ass. I can still eat and speak but there are signs that that soon will be a thing of the past. And sadly, because extreme fatigue is simply run-of-the-mill for this disease, I will have to leave this show long before it’s over because I simply don’t have the energy to stay.

I say none of this because I seek pity or because I go around feeling sorry for myself. The truth is that the often awesome army has made the most difficult time in my life into something special. Because of the Army, I know I always will have people help me with the things I can’t do myself. I may have lost four limbs but I’ve gained hundreds.

But I want to make one thing clear. The often awesome movement is not about me. For one it’s about community. But more importantly it’s turned into a true ALS awareness campaign. Which is what it needs to be. We are America’s best kept secret disease. Most people simply don’t know what it is or how it affects people. The pharmaceutical companies will never care about us because there’s not enough of us to be profitable. It’s been 28 years since both my mother and grandmother died of the same disease and we still have no way of treating it. And now too I am dying from it.

The only way to fight this disease is to wage a full on awareness campaign. Because until the public is made aware of how devastating this disease is to those affected by it and their friends family and community, no movement forward can be made.

Kaylan and I sincerely thank each and every one of you for the kindness, love and care you’ve shown us over this very difficult year. I can’t begin to express my gratitude. As I said before there has been far more positive that’s happened since my diagnosis than negative. I couldn’t ask for any more.

But I’m going to. Please educate yourself about what this disease does. And talk about it. Remind people that this is not simply a disease that took a baseball player in 1939. But a disease that still remains untreated and can affect people as young as 16. Invite them to be a part of the often awesome army. Spread the word about the web series. Please help me raise awareness of this disease.

Thanks to all who made this night possible. Those who put it together, and the musicians who are lending their talent.

– Timothy LaFollette