Stay Strong vs. ALS

March 2026 Update

My last presentation at Caterpillar was Strike the Balance (https://youtu.be/Cd92mKdDE_c?si=wC-h1fNhynt1Z28g). Finding balance has never been easy, and in today’s interconnected world, it’s never been harder.

Since leaving Caterpillar, I search for balance in different ways. My time is split between executing a health focused protocol, staying engaged in business through boards and growing a development business with our son Jay, spending quality time with family and friends, and working to make a difference in what is a tough disease.

Pursuing this balance has led to a great quality of life. Earlier this month, I had the opportunity to open the annual Johns Hopkins Packard Symposium in Baltimore. The Symposium brings together roughly 500 research scientists from around the world and stands as the most collaborative ALS research platform. Support of the Packard Center, combined with Answer ALS/Neuromine, gives me confidence that – with the support of many of you – we are making a real difference.

Later in the month, I spent a week at the beach with the entire family, which truly is the best part of life. “Da Boys” loved their time with Charlotte, and we’re all excited to welcome another little boy this August. What a blessing.

On the health front, things do get a bit more challenging each day, but as shared above, there are more than enough reasons to keep pushing.

That’s all for now. You stay strong and I will do the same. Ed

March 5, 2025 Update

I just finished 2 1/2 days at Johns Hopkins. I spent time with my neurologist and the head of the clinic and the good news is, they still consider me an outlier with plenty of runway ahead. Yes, mobility is a challenge, but I am so fortunate with the slow progression.

I spent the majority of my time at the annual Packard Symposium where more than 350 researchers from around the world come together and openly share unpublished science. When first diagnosed, I was looking for the most collaborative force in the world of ALS research. I was then and even more so today am convinced it is the Packard Center at Johns Hopkins.

While there is still a long way to go, the combination of a highly engaged research community, enriched sources of data such as Answer ALS, increasing levels of collaboration, and new and developing tools such as AI and machine learning does give me hope.

That is all for now. You stay strong and I will do the same. Ed