In May of 2024, during a visit to Chicago, my dad mentioned for the first time that he was having difficulty speaking. Speech required his full effort or came out slurred. Over the summer, he underwent every known neurologic test, and at the end of the summer was diagnosed with bulbar onset amyotrophic lateral sclerosis. When you have ALS (Lou Gehrig’s disease), your nerves stop providing signals to your muscles, so your muscles rapidly deteriorate. When you have bulbar onset ALS (~30% of ALS cases), this process predominantly affects the facial/throat muscles that control speaking, eating, swallowing, and breathing. Not great. We sought a second opinion from our local academic medical center. They agreed. 

During the past year, my dad has lost a lot. He has lost his ability to swim. He can no longer sing. Eating has become slow and awkward for him. He has given up certain foods. He has limited social outings to only those with his closest friends and family. Our weekly Sunday catch-up phone calls have transitioned to email. He has done everything he can to fight it - started medications, met with speech therapists, entered clinical trials, and yet his symptoms have worsened. He feels a loss of control. We all do. 

We all cope in different ways. I run. Running was never his thing. While he loves the outdoors, he prefers to cycle, golf, swim, hike, or ski (he’s still carving black diamonds). I don’t think that running makes much sense to him. This probably won’t be the thing that changes that, but I’m running the 2025 Chicago Marathon for TeamALS. 

I can tell you firsthand that medical research is hard. It’s tedious. It’s slow. It’s expensive. But it’s how change happens. It’s how medications are developed and how they’re improved. It’s how diagnoses change from terminal to manageable. There is no known cure for ALS. The patients who have it, the physicians who treat it, and the researchers who study it need support. 

If you can, please contribute to this race and this cause. ALS United funds research, partners with local organizations, and advocates for policy changes to help support patients with ALS. Please donate and help defeat ALS!