My ALS Journey™: Changing the Way People Live with ALS


A diagnosis of ALS is overwhelming and frightening. It is filled with many unknowns, grief and change. The disease follows no predictable path and adheres to no set timeline. Planning ahead helps to alleviate some of the chaos of change, but how do you know what to plan for or what questions to ask?

Last week, The ALS Association launched My ALS Journey, a new interactive, web-based tool that allows people living with ALS to take control of their journey with the disease. Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey.

I want to be prepared. I want to know all the steps. But not everyone will want all the info all at once. A tool that considers this, as well as different learning styles, is invaluable to the ALS community.”
My ALS Journey User

“We are committed to ensuring that every person living with ALS and their loved ones have access to high-quality care and effective treatments wherever they live,” said Calaneet Balas, president and CEO of The ALS Association. “Our new technology platform – My ALS Journey – serves a critical purpose and gives, at the click of a mouse, personalized resources tailored to their unique needs. My ALS Journey adapts with them, for them.”


Users can browse articles, view videos and find other helpful resources and information specific to any stage in their ALS journey. By proactively serving up answers to questions people don’t know to ask, My ALS Journey can help provide a better quality of life for people living with the disease and their loved ones.

Users can also create a personalized profile, so individuals can learn about the appropriate – and time sensitive – interventions available to truly live stronger and better with ALS. Users can check in as often as they’d like and update any changes in their symptom progression or areas of interest to get the right information, personalized just for them. They can also save resources to a personal library, share with their loved ones, and hear from other people living with ALS to find ways to engage in the world around them.

There is no generalized ALS patient journey — at least not one that wouldn’t derail or overwhelm anybody — so, personalization is key to a sense of support and belonging for all patients.”
My ALS Journey User

“What an incredible resource for our community and for our Care Services teams in providing continuity of care and helping individuals living with ALS engage in the world in the way they want,” says Tonya Hitschmann, ALS Association care services managing director in Texas. While this new tool is not designed to take the place of the personal touch provided by local care teams, it provides an opportunity for people with ALS and their loved ones to access critical ALS information 24 hours a day, seven days a week.

My ALS Journey was developed to empower people with individualized guidance for navigating ALS so that no one living with ALS has to feel like they are alone in THEIR personal journey.

People living with ALS can access My ALS Journey by visiting

Stay up to date on the latest information about ALS care, disease management and resources to by subscribing to our quarterly e-newsletter, Care Matters.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at


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