Stay Strong vs. ALS

23/03/2026

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

13/11/2025

I don’t post updates often, but did want to add one thing to last weeks post on the 10 year anniversary of my diagnosis. We had a family celebration over the weekend and the kids worked with a singer/songwriter to create a song to tell the story of the last 10 year journey.

One of the things my diagnosis has illuminated is that none of us are immune from hardship, strife or adversity. So for me, this song is for all of us that deal with this harsh reality of life. You stay strong and I will do the same.

https://open.spotify.com/album/0r4TzBqMzeHtsJtBZb7Aed?si=2GeP60AfSh6ZvvdMg29VGQ

Songfinch · single · 2025 · 1 songs

05/11/2025

November 5, 2025 - 10 Years

2025 is a year of 1’s and 0’s - 100 years for Caterpillar and 10 years since my ALS diagnosis. Both have been an amazing part of my journey. I loved my time at Cat even though it didn’t finish as I had hoped. And, ALS has given me a sense of purpose in the next chapter of life.

On the health front, I am staying strong. Yes, it is a grind and gets a bit more difficult each day but it is a grind worth taking on. On making a difference, earlier this week, Answer ALS/Neuromine announced the completion of loading more than 5 billion data points on each of the more than 1000 study participants highlighting the work the team has done over the past 10 years (https://www.prnewswire.com/news-releases/answer-als-completes-release-of-full-dataset-and-integrates-als-tdi-arc-study-data-into-neuromine-302602701.html).

This work has been supported by many of you and is making a difference as we have created the large data set Pharma and researchers need and the AI and Machine Learning community is starting to engage. The secret sauce lies in the combination of the data, AI capabilities and deep domain knowledge about the disease and we are bringing these together. There is reason for hope but there is so much more work to do.

In closing, the attached pictures capture two key parts of my ALS journey. Our oldest grandson Cole was born a few months after I had my first symptoms. While I no longer play golf, the fact that I can still take him golfing is such a gift. And, the picture from the ALS Walk in Peoria earlier this year is just one example of the support I have received from so many on this journey.

100 years for Cat, 10 for me, both are to be continued. Stay strong, Ed

30/06/2025

June 30, 2025 Update

When our kids were growing up, during family dinners, we always did High‘s/Low’s to spur conversation. If you ask a kid, how was school, they say, fine. But when you ask, what was the best part of your day and what was the worst part of your day, it leads to a totally different conversation.

As we come to the end of June, I was reflecting on the extremes of my highs/lows for the month. On the “High”, it was celebrating a 35-year relationship with the Doyle family in the Sierra Nevada mountains. What started as a professional relationship when I was the San Francisco District Manager for Caterpillar has transitioned to a personal friendship that not only includes Ann but also our kids and now our grandkids. The time together just reaffirmed that Caterpillar is a relationship business, we just happen to sell machines, engines, and parts.

The “Low” for the month was also extreme. I lost a dear friend, Peter Warlick, to this devastating disease. As this short tribute video (https://youtu.be/2XODTyNlrEM) highlights, he faced the disease with courage and an absolute drive to make a positive difference. In the beginning, there were three ALS patients working together to help stand up Answer ALS; myself, Peter and Jay Fishman. We are now down to one. With his passing, the emotions range from sadness to anger, but I quickly settle into a greater sense of resolve to make a difference, to keep pushing.

As we head into July, my understanding that every day is a gift has been reinforced. You stay strong and I’ll do the same. Ed

05/03/2025

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

05/11/2024

Nov 5, 2024

Nine years ago today we dealt with the harsh reality of an ALS diagnosis. While I was hopeful from the start, I have to admit I would not have thought that nine years later, we would be dressing up for Halloween (you have to maintain a sense of humor) with our five grandkids. It was just another reminder that while life has its many challenges, it also has its many blessings.

On my health, I am staying strong. Yes, mobility gets more difficult each day, but I am still on my feet. On the research front, we are getting close to finishing the build out of Answer ALS, researchers around the world are utilizing the one of a kind asset and we are starting to engage the AI and Machine Learning community. I remain hopeful that we can play a part in starting to unravel the mystery behind the disease.

That’s all for now – onward to year 10. Stay strong. Ed

Pictured left to right: Dinosaur Rider (Leo), Jovie (Ann), Pumpkin (Charlotte), Buddy the Elf (Ed), Referee (Eli), Sumo Wrestler (Cole), Buzz Lightyear (Brody