ALS Nexus 2026: Event spotlights care advances, community goals

Nearly 500 people gathered in Orlando, Florida, and more than 1,900 joined them online to discuss advances in amyotrophic lateral sclerosis (ALS) research and care and community goals for the future at the third annual ALS Nexus Conference.

Clinicians, researchers, patients, caregivers, advocates, industry partners, and others in the ALS community attended the Aug. 23-26 event hosted by the ALS Association.

“Thank you to everyone who attended virtually or in person!” the association wrote in a conference recap emailed to attendees. “Your energy, ideas, and collaboration made ALS Nexus a true success and strengthened the connections and collaborations that will help us make ALS livable and cure it.”

Meeting presentations and discussions covered a range of topics, from multidisciplinary care to genetic counseling, artificial intelligence, clinical trials, and navigating insurance issues.

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Speakers included former pro wrestler and Dallas Cowboys cheerleader Tanea “Rebel” Brooks and Emmy award-winning host and New York Times bestselling author Tabitha Brown.

Brooks spoke about the journey to her own ALS diagnosis, and rallied the audience to work together toward better ALS care and research. Brown, in a fireside chat with ALS Association president and CEO Calaneet Balas, talked about the role of joy, hope, and gratitude in her mother’s experience with ALS and in the years since her death.

As in past years, the ALS Association recognized its ALS Hero Award recipients, who were honored for their outstanding contributions to the ALS community.

This year’s awardees were Tim Ritter, Allison Bulat, Alecia Bailey, and Cissy and Chris Larkin. Ritter and Chris Larkin have ALS, while Bulat, Bailey, and Cissy Larkin have been care partners to spouses with ALS.

The ALS Association made some changes to the conference this year based on feedback and experience from previous ALS Nexus conferences.

Among them was an updated exhibit hall experience, dubbed the Nexus Pavilion. It included an exhibitor area, poster session, and ALS AccessAbility, an immersive, home-like experience equipped with adaptive technologies people with ALS can use in their daily lives. Because the Nexus Pavilion was consolidated into a single day, local members of the ALS community could receive free day passes to experience it.

Nicole Eck, chief strategy officer for the ALS Association, told ALS News Today that participants’ response to the experience was “remarkable” and “very well received.”

The pavilion offered patients and caregivers a “dedicated opportunity to … explore tools and technologies that could benefit them, discover emerging science through our poster session, and perhaps most importantly, connect with others on a similar ALS journey,” Eck said in an email to ALS News Today.

The AccessAbility space, in particular, proved to be a “game-changer,” said Marianne Keuhn, vice president of care services at the association.

She said feedback on the space was “overwhelmingly positive,” and participants enjoyed seeing how the equipment works in real time and in spaces similar to where it would be used in a home, such as a kitchen or bathroom.

“Each space offered valuable, practical information about how someone could adapt and remain as independent as possible in their own home,” Keuhn said.

Also new this year were classes for ALS professionals for experts to connect and collaborate on ways to improve ALS research and care, and classes designed for people living with ALS and their caregivers, offering practical support for navigating life with the neurodegenerative disease.

“The level of interest far exceeded our expectations,” Eck said. “We had waiting lists to attend many sessions and will likely need to expand our meeting spaces to accommodate the demand in future years.”

The additions to this year’s event will likely be back in the coming years.

“The overall approach to convening this year proved sound, and we anticipate the conference will largely continue to look much like it does now,” Eck said.

ALS Nexus will return to Orlando next August. Eck said the association will work to move the conference to other locations in future years so that more people will have the chance to experience it in person.

Note: The ALS News Today team is providing virtual coverage of the ALS Nexus Conference Aug. 23-26. Go here to see the latest stories from the conference.