Last week I visited Cytokinetics, a company in South San Francisco that makes, among other things, drugs to treat ALS. They don’t have anything approved by the FDA, but they’re working hard with a new drug in the pipeline, and I was extremely excited to meet and speak with them.

When I rolled through the offices, I saw many familiar faces in the photos up on the wall. Corey, Logan, José, Shelly. Logan is a young neighbor of mine. He does not have ALS, but a different muscular disease that keeps him wheelchair-bound. The others are my ALS friends. We lost José last fall, and seeing his smiling face and remembering his deep, compelling and radio-ready voice was an emotional moment for me.

The folks at Cytokinetics asked me really interesting and thoughtful questions. What is the one thing I think people misunderstand about ALS that I want them to know? What are the tools I use to get through this with a positive attitude? How has my perspective changed since my diagnosis six years ago? How have Scarlett’s friends reacted to our situation?

Short answers:

It is not constant suffering. You could handle it. Trust me.

My friends. I realize calling your friends tools isn’t necessarily accurate, but there you have it. Jay and Stephen, you guys are such tools. Read More>