More than 100 people gathered with a shared purpose at the 2026 Live Like Lou ALS Research Symposium: to accelerate collaboration, spark new ideas, and help discover new treatments, and ultimately a cure for ALS.
Researchers traveled from around the world to share their latest discoveries. People living with ALS and their families joined the conversation.
For a few days, research and lived experience shared the same room.
And that is where meaningful progress begins.
At Live Like Lou, people living with ALS and their families are at the heart of everything we do. The Symposium reflected that commitment by intentionally bringing the ALS community into conversations.
David Betts, who is living with ALS and serves as the creator of Talk to Me, Goose! and StoryFlight Labs, shared his personal ALS journey with attendees. His story brought a powerful perspective to the scientific conversations happening throughout the Symposium and reminded everyone in the room that ALS does not look the same for every person or family it affects.
David and Hannah from StoryFlight Labs also demonstrated the Talk to Me, Goose! app, showing how technology can help people living with ALS communicate and stay connected.
Throughout the Symposium, researchers exchanged ideas and shared the latest work happening across the ALS field.
Abstract presentations and poster sessions gave researchers the opportunity to showcase promising discoveries and connect with others working toward the same goal. Ten poster presenters received special recognition for their outstanding contributions.
Daniela Zarnescu, PhD, of Penn State College of Medicine, hosted the 2026 Live Like Lou ALS Research Symposium. A founding member of the Live Like Lou Foundation’s Scientific Advisory Board, Dr. Zarnescu has long been committed to advancing ALS research while mentoring the next generation of scientists.
At Penn State College of Medicine, Dr. Zarnescu and her team use a “fly-to-human” approach to study the molecular mechanisms underlying TDP-43 proteinopathies, focusing on protein synthesis, cellular metabolism, and environmental factors.
The Symposium also featured keynote presentations from two leading voices in neurological research.
Jeffrey Rothstein, MD, PhD, Professor of Neurology and Neuroscience at Johns Hopkins University and founder and director of the Robert Packard Center for ALS Research at Johns Hopkins, shared insight from decades of pioneering ALS research. His work contributed to the development of the first FDA-approved therapy shown to slow ALS progression.
Jason Shepherd, PhD, Professor of Neurobiology and Jon M. Huntsman Presidential Endowed Chair at the University of Utah, explored the science behind how the brain learns, changes, and stores memories, and what happens when neurological disease disrupts those processes.
The Symposium was also a moment to look back and recognize the people who helped make this work possible.
Live Like Lou presented a special recognition award to co-founder Suzanne Alexander and former Scientific Research Committee chair and vice chairman Gaylon Morris for their leadership and commitment to the Foundation.
Their belief in Live Like Lou helped lay the groundwork for the organization’s continued investment in ALS research and its vision to leave ALS better than we found it.
That legacy came to life again during an ALS community trivia event hosted by Live Like Lou Board of Trustee John Roselle. John, whose wife Laurie passed away from ALS, brought people living with ALS, loved ones, researchers, and supporters together for a wonderful evening together.
The 2026 Live Like Lou ALS Research Symposium happened because people chose to invest in the future of ALS.
We are grateful to the sponsors who helped make it possible:
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We are especially grateful to Shionogi and StoryFlight Labs for joining us at the Symposium and sharing valuable services and resources with attendees.
We also thank our Scientific Director, Evangelos Kiskinis, PhD, and the Live Like Lou Scientific Advisory Board for their expertise, leadership, and continued commitment to advancing ALS research.
The Symposium may be over but the work continues.
Researchers will take new questions back to their labs. Collaborations will continue beyond the walls of the Symposium. People living with ALS and their families will continue to shape the conversation. And Live Like Lou will continue investing in the people and ideas that can change the future of ALS.
Because when we bring the ALS community together, we create more opportunities to turn ideas into action, research into progress, and hope into a future without ALS.
That is how we leave ALS better than we found it.
Onward.
