Friday, May 8, 2026

Friday, May 8, 2026

Today’s post is from Nikki

The sea of blue flags overlooking the Washington Monument on the National Mall is incredibly powerful. This morning, Zack and I walked through the ‘I Am ALS’ display of 6,500 blue flags overlooking the Washington Monument. Each flag honors someone living with ALS or someone we have lost to the disease. Every story is unique. Every journey with ALS looks different. And behind every single flag is a community of family and friends rallying around them with love and support.

I thought of each and every one of you when I was walking through the rows and hoping that each person has people like you to support them. Thank you, Andy’s Army, for everything you have done to show up for us and continue honoring Dad’s memory. Pictures below of Andy’s flag and Pete Saunders’ flag. Pete, who is living with ALS, was introduced to Dad through ALS United.

Yesterday, I mentioned that Katie Wonnenberg was part of the volunteer crew helping place all of the flags on the Mall. What I failed to mention is that she did it in pouring rain. And somehow, she managed to place Andy’s flag in the very front row. Dad would have absolutely loved that and been so tickled knowing his flag is the front row (all jokes aside at how ‘student-Andy’ would never have sat in the front row). Thank you, Katie. ❤️

There was also a ceremony this morning to kick off the display and talk about the progress being made on Capitol Hill. Over the last five years, there has been more federal funding dedicated to ALS research than ever before. Because of those efforts, we are getting closer to answers, treatments, and hopefully cures. The advancements made in just the last 12 months have been extraordinary. In fact, there was a New York Times article published this week about a new drug that is stopping, and in some cases reversing, progression for a very small subset of ALS patients with a specific genetic mutation. Reversing. ALS. Symptoms. Dad knew he likely would not see a cure in his lifetime, but he still fought hard for access to innovative treatments and research. He willingly shared his medical information and experiences in ALS databases so researchers and doctors could learn more and hopefully help future families facing this disease.

One correction from yesterday’s post: the 6,500 flags on the Mall do not represent the total number of people living with ALS in the United States. That number is closer to 35,000. Even more reason to keep the momentum going.

And if anyone wants to come to DC next year for the flag ceremony, Zack and I would absolutely love to host you. Love, Nikki