I never expected at 39 to open @wired and find my life laid beautifully naked before the world by @brbarrett. I also never expected at 36, on the same day we brought our 2nd daughter home, to be told that I had a terminal illness. But here we are. https://www.wired.com/story/life-just-out-of-reach-als-brian-wallach/

ALS is a strange disease. It is 100% fatal, afflicts every race and gender as well as those young and old. And yet except for a few fleeting moments ALS flies under the radar. Lives in the shadows. In part because it is sporadic, appearing with no warning.

So most don't know how close we are to treatments for this terrible beast. Most don't know that if we find cures for ALS, we can help unlock cures for Alzheimer's, Parkinson's, MS, FTD and beyond. Indeed, I had no idea when I was diagnosed. Heck, I didn't even know what ALS was.

We launched @iamalsorg in early 2019 to change that. To empower patients to lead the fight for cures and to democratize care so that everyone could have access to the best chance to save their life. To have access to the same care I wanted for myself.

We did so as it quickly became apparent that the healthcare system was broken yet kept churning along because patients didn't have time to advocate. Instead, we were diagnosed. We died. Quickly.

Eighteen months later, patients have found their voice. They are changing the fight. They are changing the system. Finding ways to increase funding for research. Fighting for ways to speed access to life-saving treatments. Fighting to bring ALS out of the shadows.

I have been fortunate to play a small part in this moment, in this movement. I have been fortunate to meet and work with the most amazing people. I have been fortunate to take a broken system head on and see it begin to change.

I have no idea if this change, these breakthroughs, will come fast enough to save my life. I, of course, hope they do. But that was never the point. The point is to end ALS. The point is to make sure that those who would follow us hear the letters ALS and know they have a chance.

The point is to have the courage to tear down the bad, the broken, and move one step closer to a brighter, better future for all. We are never guaranteed tomorrow so we must seize today. I hope you will join us today. Join and make the impossible real. #EndALS