This week, our inaugural ALS Nexus conference brought members from across the ALS community together to connect in a way that’s not been seen before, working and collaborating to change the future of the disease.
As Scott Kauffman, Chair of the ALS Association Board of Trustees, pointed out, there hadn’t been a SINGLE conference that brought the communities of ALS care, research and advocacy together with people living with ALS, their families, and caregivers. That is until now.
“All three groups are vital to our mission, and they all need to be rowing in the same direction,” Kauffman shared. “And for us, that direction is making ALS livable until we can cure it.”
More than 500 people gathered in-person just outside Dallas, while more than 1,000 attendees virtually joined to participate. Sessions, presentations, and discussions throughout the event centered around the progress that’s been made in the last 10 years, looking ahead at what the future might hold in the ALS space, and developing strategies on how we can all work together to make ALS livable for everyone, everywhere.
Because of the awareness and funds raised since the ALS Ice Bucket Challenge became a world-wide viral sensation, we’ve seen major advancements in all areas—research, advocacy, and care—that have impacted the ALS community and have changed the future and trajectory of the disease, and our hopes for the future. So, it was only fitting that ALS Nexus also included a ceremonial splash in honor of its 10th anniversary!
“It really puts into perspective that while there may be a long way go, ALS is more livable now than in the past. Thanks to innovation and hard work in advancing research and multidisciplinary care,” said Mike Henry, a veteran diagnosed with ALS in 2020 at the age of 42. “More than that, it gives me hope that progress will continue to grow exponentially with advancements in treatment and equity. Innovation and technology are important to achieving this, but so is coordination of efforts across disciplines and among all stakeholders, as exemplified by this conference.”
In addition to the large group gatherings, the breakout sessions featured content and conversations covering all facets of ALS, including innovations in assistive technology, caregiving, updates on research and clinical trials, increasing access to ALS care, and advocacy on the local, state, and national levels.
Experts across all fields offered insights and all sessions featured time for meaningful discussion and questions from the community. And informal chats in the hallway or over a coffee or lunch allowed many to rekindle old friendships and create new ones.
The final group session of ALS Nexus was a comprehensive discussion on how everyone from every sector—public, private and non-profit—has a part in the fight to end ALS. But as Alan Leshner, chairperson of the recent The National Academies report on how to make ALS livable noted, the ALS community has the most important role to play.
“I've chaired a variety of National Academies reports over the course of the last couple of decades, and the ones that work are the ones that have advocates,” Leshner shared.
“Frankly, it depends on you all. It depends on the ALS community coming together. We, the members of the committee, will of course continue individually to advocate, but there is nothing more powerful than individuals suffering from the disease, their family members and their caregivers (telling their stories)."
A powerful and inspiring message to all who participated in the event.
"I just wanted to personally thank you all for spending your time, your treasure and your brain power to be here, both virtually and in person,” Balas said as the conference concluded.
Plans are already under way for ALS Nexus 2025 to be held next August 11-14, but the collaborations that have begun or were furthered during this year’s conference can and will continue in the weeks and months ahead, and beyond.
“This is the start of a conversation. And hopefully it can lead to some really important outcomes in the coming years,” said ALS Nexus speaker Suma Babu, M.D., M.P.H., MBBS, Assistant Professor of Neurology at Harvard Medical School.
Thank you to everyone who attended ALS Nexus, both in-person and virtually. And thank you to all of our speakers and all of our sponsors for making this incredible event possible!
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