As ALS Awareness Month comes to a close, it’s a good time to reflect on what we’ve accomplished, and perhaps more importantly, to find ways to both sustain and build upon our momentum as we search and fight for cures. For the past month, members of the ALS…
Thunder Road — Juliet Taylor

Juliet lost her husband, Jeff, to ALS in 2020, 19 months after his diagnosis. Together Jeff and Juliet enjoyed being on the water, live music, pets, and traveling. She was his primary caregiver, and finds meaning and healing in helping individuals and families who are living with or have lost a loved one to ALS. Juliet lives with her rescue pup, Sailor, on the eastern shore of Maryland, in a home that Jeff chose because it reminded him of his beloved Green Lake in Michigan.
In the early, scary months after my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I started to realize that I had no idea what we were up against. At almost 50 years old, I’d heard of ALS only through the Ice Bucket Challenge and…

Like many others, I completed the Ice Bucket Challenge when it became a cultural phenomenon in 2014. Created by Anthony Senerchia, Pat Quinn, and Pete Frates, who were living with ALS and have since died from the disease, the challenge involved being doused with a…
When I look back at photos from when my late husband, Jeff, was living with ALS — something I do often to find inspiration for this column — I’m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness.
When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the…
Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but mysterious foot drop, and together our concerns grew when he began to slur his speech. From…
I’ve written before about how my late husband, Jeff, drew inspiration from Lou Gehrig, even before his ALS diagnosis in 2018. Today, I’m sharing how I now do the same through Live Like Lou, the ALS organization that bears Gehrig’s name. When I met Jeff,…
I have always been a summer person, relishing how everything in nature quietly comes to life — lush, green grass, abundant wildlife, and densely leafy trees. To me, summer evokes peace, calm, and lazier days. My late husband, Jeff, on the other hand, was a winter person. As much as…
In the wake of ALS loss, certain touchstones bring comfort every time I think of them. This includes small things like funny photographs, private nicknames, and sentimental gifts. In grief, even a favorite old coffee mug can bring immeasurable joy. I have one additional beloved thing, too: a quotation…
I’m not a big believer in making New Year’s resolutions. There’s something that feels bad about setting a goal that’s lofty — learning a new language is one of my perennial favorites, for example — and then not accomplishing it. Plus, I keep a daily to-do list that includes some…
A few weeks before Christmas Day in 2018, my late husband, Jeff, and I sat side by side on the edge of our bed, preparing to create the most meaningful Christmas gifts we’d ever given. Laid out beside us on the bed were four children’s storybooks, each with a Christmas…
My late husband, Jeff, was diagnosed with ALS just before Thanksgiving in 2018. His diagnosis had come swiftly — we’d first heard mention of ALS in July and his illness was confirmed in October, backed by a second opinion in November. Because there’s no definitive test for ALS,…
When my late husband, Jeff, died of ALS in May 2020, I was awash in grief and lived in a world completely inhabited by memories. I obsessed over our every detail of our lives, large and small. Some thoughts were comforting and reminded me of our happy life together:…
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