Friday, July 18, 2025 – Day 339
Friday, July 18, 2025
Good morning—it’s Friday! Hope you have some exciting plans for the weekend.
Yesterday, we had the privilege of meeting a young man named Dean, who’s traveling across the U.S. gathering perspectives from individuals diagnosed with ALS.
Dean is 19 years old, freshly graduated from high school, and using his summer break—before heading off to college—to pursue this project. I thought back to where I was at 19, and I can tell you with absolute certainty: I wasn’t anywhere near mature enough to take on something this meaningful. What Dean is creating will have a lasting impact—not just for his own family, but for the broader ALS community. I’m deeply impressed by his commitment.
Dean’s mother, Lisa, was diagnosed with ALS when he was a freshman in high school. She had familial ALS, caused by the SOD1 gene mutation—one of the earliest genetic mutations linked to the disease and a major focus of pharmaceutical research. At the time of her diagnosis, a clinical trial targeting SOD1 was already underway, but because her diagnosis came too late, she wasn’t eligible to participate. Despite her relentless efforts to convince the drug manufacturer to make an exception, she was denied access. Lisa passed away just four months later. She had bulbar-onset ALS—the most aggressive form—attacking the muscles responsible for speech, swallowing, and breathing. Most patients with bulbar ALS die within a year.
This story hit me hard. I can’t even imagine having just four months to process a diagnosis like this, say goodbye to your loved ones, and try to wrap your head around what’s happening—especially with young children in the picture. And to be denied a drug that might have extended her life, even just a little… that’s heartbreak layered on top of heartbreak. I don’t know how to make sense of it.
Dean arrived promptly at 2:00 p.m.—though I wouldn’t be surprised if he’d been parked down the street for an hour just to make sure he wasn’t late. When he pulled into the driveway, we went outside to greet him. He jumped out of his SUV with a terrific, engaging smile and a warm handshake. His smile was the kind that instantly puts you at ease—he was just plain likable from the moment he stepped out of the car. His personality is easygoing and sincere. Cindy and I felt comfortable with him right away, and of course, I couldn’t help myself from peppering him with questions. I wanted to know more about his story.
We chatted for about 15 minutes while he set up his recording gear, and then—just like that—the camera was rolling. Dean had nearly 30 questions lined up, so we jumped right in.
It only took one question for my pseudo-bulbar symptoms to kick in. He asked about my early symptoms and diagnosis—always a tough subject for me to revisit. Emotions came fast, and it was a blessing to have Cindy sitting beside me. A few times, I opened my mouth to answer and… nothing came out.
The interview lasted around 90 minutes. I did my best to get through the questions, but I was emotional throughout and had to take several breaks to compose myself. I honestly don’t know how the final edit will turn out. I’m hoping Dean finds 5 to 10 minutes of usable footage where I managed to be both coherent and clear.
By 4:00 p.m., Dean had packed up and was getting ready to leave. Before he took off, he asked if he could photograph the custom cane Alex made for me—a thoughtful touch that ended up saving us from forgetting again to take a photo for the blog. Thanks to Dean’s nudge, we got that shot to post here today.
I’m really looking forward to seeing what Dean creates from this project—his cross-country journey capturing the diverse experiences of people with ALS. I’m honored he chose to make Crystal Lake one of his stops. After some inquiring, I found out that I was the only one being interviewed in the Chicago area. I feel so honored to have been chosen.
Safe travels, Dean. And thank you—for sharing Lisa’s story, for telling ours, and for carrying the voices of so many ALS families forward. Godspeed to you.
Here is the link chronicling Dean’s journey.
Have a great Friday everyone. Love you guys! ❤️
