ALS Nexus 2026: Changing the future of ALS ‘takes us all’
Conference brings together researchers, policymakers, advocates
Written by |
- The ALS Nexus conference unites researchers, clinicians, caregivers, and patients to collaborate on changing the future of ALS.
- Key sessions focus on multidisciplinary care, promising new ALS therapies, digital monitoring tools, and artificial intelligence integration.
- The event emphasizes community engagement, offering specialized masterclasses, community classes, and adaptive technology showcases to support patients.
Researchers, physicians, industry partners, caregivers, and people with amyotrophic lateral sclerosis (ALS) are gearing up to gather for the third annual ALS Nexus conference, an effort from the ALS Association to bring the ALS community together around a shared goal of changing the future of ALS.
The meeting will take place Aug. 23-26 in Orlando, Florida, with an option to attend virtually. Registration is free for people living with ALS and their caregivers.
“Building on the success of our first two years, we’re creating an experience where every attendee can see how they fit into the larger movement to make ALS a livable disease,” Nicole Eck, chief strategy officer at the ALS Association, said in a written Q&A with ALS News Today. “We want people to leave not only inspired, but with a clear action plan for how they can help move our shared work forward. And through it all, we’re grounding the experience in something deeply human: hope, joy, connection, and gratitude.”
Eck said this year’s conference is shaping up to be the “best ALS Nexus yet,” with “an exciting array of content.” The event will start with a session on approaches to multidisciplinary care, and the agenda includes presentations on promising new ALS therapies, navigating health insurance barriers, digital technologies for monitoring people between clinic visits, and the future of artificial intelligence in ALS care.
While prominent scientists, physicians, and policy leaders will speak at the event, the meeting will also put a strong emphasis on the human experience of living with ALS, giving attendees several opportunities to hear directly from people affected by the disease.
Messages of hope
This year’s keynote speaker is Emmy award-winning actor, author, and advocate Tabitha Brown, who lost her mother to ALS in 2007. Brown will share a message centered on joy and gratitude, drawing on her experiences with her mother and her own philosophy of resilience and hope.
Brown will be followed by a presentation from Richard Bedlack, MD, PhD, director of Duke University’s ALS program, and Peggy Plews-Ogan, MD, a doctor and University of Virginia professor who lost her husband to ALS in 2024. The pair will discuss hope as a meaningful and measurable aspect of ALS care.
Eck said that while the overall strategy of “connecting, collaborating, and changing the future of ALS remains unchanged” in this third year of ALS Nexus, the ALS Association has used experiences from the last two years to optimize the meeting. The goal is for all attendees to leave with actionable information.
As part of that goal, this year’s meeting will offer Masterclasses, deep-dive interactive sessions designed for medical and scientific professionals, as well as Community Classes, designed for people living with ALS and their caregivers to share their lived experiences. This format is proving popular among attendees, and there are wait lists for some sessions.
Also spotlighted at the event is the Nexus Pavilion, where attendees can explore new technologies, interact with exhibitors, and speak with researchers working on the future of ALS treatment and care.
The pavilion will include an immersive experience that takes attendees through ALS AccessAbility, a home-like space equipped with adaptive technologies to support independence for people with ALS and ease the daily burden on caregivers.
An exhibitor booth area will provide opportunities to learn more about emerging technologies, see demonstrations, and build connections with developers. This is adjacent to a scientific research hall where participants can talk to ALS scientists.
“The Nexus Pavilion is much more than an exhibit hall,” said Eck. “It’s where the entire community connects to change the future of ALS” as well as a place for “immersing yourselves in the science, the technologies … and a community of shared experiences will bring new hope about what is truly possible.”
Accessibility is a key aspect of the meeting, and the organization aims to make it as meaningful for virtual attendees as for those joining in person.
Sessions will be livestreamed, and some will offer virtual attendees the option to engage in discussion and participate in live polls. The Nexus Pavilion will also have a virtual option, through which attendees can interact with presenters and exhibitors and access staff expertise through the virtual AccessAbility experience.
Ultimately, ALS Nexus is designed with the belief that progress in ALS research and care can only be achieved through collaboration with all members of the community — including patients and caregivers.
“The road to making ALS livable and curing it takes us all,” Eck said. “The ALS Association designed ALS Nexus to ensure that no matter where you are, what you do, and how ALS affects you, that you have a seat at the table in this journey.”
Note: The ALS News Today team is providing virtual coverage of the ALS Nexus Aug. 23-26. Go here to see the latest stories from the conference.
Leave a comment
Fill in the required fields to post. Your email address will not be published.