Fall is a crazy time. Maybe that’s true for everyone, but for some reason this fall seems more chaotic than usual in our house. Or, if not exactly chaotic, then just busy. This past weekend started with the Friday publication of an essay I wrote for CNN. I was so excited, and spent the morning toggling back and forth between different sites, trying to determine if anyone was reading it. They were! At which point I had to question my decision to send CNN that one picture of myself in the ICU with very, very dirty hair.

I then spent the afternoon at a trampoline park with Scarlett and one of her friends. When they got bored of bouncing, they went outside into a grassy field, dumped dirt on each other, and then found some puddles to splash around in. I put my mud monster into the car about an hour later, and the evening was spent trying to find a child beneath the dank exterior of what looked more like one of those dogs with dreadlocks.

So when I say we’re “busy”, I don’t always mean busy in a cool way.

But on Saturday night we went to a wonderful fundraiser for ALS TDI, put on by Corey’s Crusaders. My friend Corey received an ALS diagnosis eight years ago when he was a 20-year-old college kid. I love how he’s beating all the odds, coaching the tennis team at his neighborhood high school, and attending every home game for the Oakland A’s, basically functioning as a member of the team.

During the event, there was a presentation that included an interview Corey and his dad Ted did with a Boston radio station. They emphasized the need for research and treatments for ALS, because if people can survive longer with the disease then we multiply the population living with it at any given time. Then we find more—or better—treatments, and the group multiplies again. And again. Until it can no longer be ignored.

Dr. Steve Perrin, CEO and CSO of ALS TDI, was also a speaker at the party. He talked about precision medicine, and the steps his group is taking to personalize their understanding and approach to solving the problem of ALS. They have a promising drug in the pipeline right now, and will be ready to bring it to trial in January 2017. I wish it was sooner, but it’s obvious the movement is happening, and that fundraising efforts remain as crucial as ever.

Dr. Perrin spoke about requesting a $28 million grant from the NIH to help speed up ALS research. It was denied. In 2014, the NIH granted $48 million total to ALS. Osteoporosis got $141 million. Cancer was near the top, with more than $5 billion. I’m not making any political statements here, just sharing a few numbers to put things into perspective. It sometimes seems obscene to be asking for more money for a disease that has achieved a great deal of recognition in recent years. Still, it’s money we need for the cures we know we can find.

The fundraising efforts shifted on Sunday, when Rob, Scarlett and I spent the day with my sister and her family at the Bridge School concert in Mountain View. It’s a show we see every year, and the proceeds benefit a school started by Neil and Pegi Young to educate children who are developmentally disabled. Because my sister and brother-in-law’s company Bandwagon was a part of the event, we got amazing seats close to the front of the stage. The line-up included Spoon, Gary Clark Jr, St. Vincent, Ryan Adams, Ben Harper, Sheryl Crow, The Dixie Chicks, and Neil Young.

We spent six hours listening to incredible live music, until it became clear that the children were turning into ice-cream zombies, and we all had to acknowledge that it was Sunday night and perhaps time to head home. There is still something very sticky on the arm of my wheelchair, which I intend to deal with as soon as I get a minute of free time.

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