Saturday, August 30, 2025 – Day 382

Saturday, August 30, 2025

Good morning, and welcome to the last days of August. With Labor Day upon us, those winter thoughts start creeping in. Sorry.

I’ve missed a whole string of birthdays my high school friends celebrated this month. Happy Birthday to Carrie, Chrissy, Paul, Tom, and Pam—all in the last week. I hope you were surrounded by laughter, love, and a cache of friends and family. 🎉🥳🎈🎂

At dinner on Thursday, Terri was told me about an NBC feature story on a man named Rakesh, living with ALS from a rare genetic mutation—so rare it’s called a “nano rare” condition. Fewer than 30 people worldwide share it. Because the pool is so small, drug companies won’t touch it—there’s no profit in clinical trials.

Enter a foundation called n-Lorem, which steps into that gap. They developed a custom treatment for Rakesh: an ASO drug that directly targets the protein causing his ALS. After four years with the disease, he’s been on the drug for a year and his progression has stopped. Not reversed—but halted. That’s a huge win.

It took n-Lorem three years and about $1.2M to develop the drug, which honestly sounds cheap when you think about what’s at stake. But with such tiny patient groups, each case requires a specialized solution. Naturally, I went down the rabbit hole, looking at my own genetic mutation—SQSTM1. It doesn’t qualify as nano rare. 😩

Still, I searched for any progress. Six hours later, I hadn’t found anything new. I usually avoid these deep dives because ALS is so complex, and the hope/despair cycle is tough. But seeing Rakesh’s progress was encouraging. If one treatment can help 30 people, maybe someday it scales to the rest of us—30,000 in the U.S., with about 10% tied to known genetic mutations. Hurry up, please!

Cindy eventually pulled me out of the house. We took Bear for a long walk to visit her old Motorola friend Ivette, who only recently learned about my ALS. Cindy hadn’t told her earlier—Ivette’s been focused on her husband Brian, who suffered a serious stroke this year. He’s still young, still working, and they’ve got two daughters in college. Their energy has gone into Brian’s treatment and recovery.

And still, Ivette had picked up some items from the store for Cindy…they had talked earlier. It was a ploy to get me out of the house and enjoy the nice weather.

Seeing Brian, reminded me again: so many families are carrying heavy loads. My ALS isn’t the only story. I just happen to write about mine every morning. I’m grateful you’re here reading, but let’s not forget others facing battles just as important to them.

On the way back, we passed Mike and Beth’s place. Their garage door was open, so we dropped in. Mike was heading to the hardware store, but instead he waved us to the backyard “for one beverage.” Well, one became many, and three hours later it was raining so we couldn’t walk home. Mike drove us home and we decided the power chair can be picked up this weekend.

Thanks, Mike and Beth—for letting us crash your evening and for giving the uninvited guests laughter and good company.

Wishing you all a wonderful Saturday. Love you guys! ❤️