My father, Jim, passed away from ALS in April 2025, just two months after receiving his official diagnosis. Even though we had watched his health decline since March 2024, we lived in a fog of uncertainty for nearly a year. No one could tell us whether his symptoms pointed to a neurodegenerative disease or an autoimmune disorder. We were left piecing together possibilities, hoping for anything but the truth that eventually arrived.
When the diagnosis came, it felt like the ground shifted beneath us. There was no roadmap, no time to prepare, and no way to slow what was happening. Suddenly, we were faced with questions no family ever wants to ask, while trying to keep my father as comfortable, supported, and dignified as possible.
As his primary caretaker, I stepped into a world I was completely unprepared for. Overnight, life became a rotation of new care routines, equipment decisions, therapy schedules, and conversations about final wishes, all while trying to keep family, friends, and caregivers informed and aligned.
Every person who loved him had their own idea of the “best way” to care for him, all rooted in love, but often conflicting. Without his voice, advocating for him and sharing his needs became my responsibility. The emotional weight of that role is something I still carry.
We relied on a simple notebook to communicate: tracking therapies, equipment, medications, questions for upcoming appointments, and messages he wanted us to know. That notebook became our lifeline, the one place where his journey, and our efforts to support him, lived in real time.
But as pages filled and handwriting became harder to decipher, I realized we needed something better.
With a background in process optimization, I began creating checklists, calendars, and structured systems just to stay afloat. That’s when the idea behind CAWM (Come Along With Me) was born.
It came from a simple gesture: every day, my father would signal for me to come along with him to update the notebook. Even when he couldn’t speak, he still wanted to be part of the process. That small act became the heart of this platform.
During my father’s illness, it often felt like we were navigating ALS alone. Yet more than 100,000 people in the U.S. receive an ALS diagnosis each year. No one should have to face this journey without clarity, support, or a place to organize the noise.
There are incredible organizations doing vital work in the ALS community. But for families in crisis, the sheer volume of information can feel overwhelming.
What we needed, and what I believe many families could benefit from, was something simple, structured, and compassionate. CAWM was created to provide exactly that.
It offers ALS-focused care guidance, organizational tools, and a calm, space to manage the day-to-day realities of this disease, at your own pace, in your own way.
We believe knowledge is power. But more importantly, we believe that structure creates space for presence. CAWM exists to help you track, learn, prepare, and stay connected to your loved one during one of the most difficult chapters a family can face.
CAWM is not a medical device and does not diagnose, monitor, or escalate symptoms. It is not used for medical studies, and it will never track, sell, or retain your personal information.
You can sign up with only an email and password. Your account will automatically close after 30 days of inactivity unless you choose to keep it longer for your family's records.
This platform was built from love, loss, and lived experience, and it is my hope that it brings even a small measure of clarity and comfort to yours.
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