ALS.Community Launches Nation’s First Patient-Led, Patient-Owned Community for ALS Support
By ALS.Community
Free online platform developed by people with ALS offers a place to connect, learn and thrive
COLUMBUS, Ohio, Oct. 20, 2026 – ALS.Community today announced its public launch as a free, first-of-its-kind nonprofit online community owned and guided by people affected by amyotrophic lateral sclerosis, commonly called ALS. Its mission is to end ALS isolation by creating welcoming spaces where people can find understanding, friendship and practical help.
Built for those living an uncommon life, ALS.Community helps members find their people: those who need no explanations. Members can roam the platform’s virtual streets, drop into a Connection Café, explore the library, bookstore, art gallery or movie theater, attend webinars and watch parties, use the world’s first ALS People Finder or connect within a Community.
Communities are the heart of the platform, with each providing a dedicated space for connection, information and inspiration. Public Communities bring the broader ALS community under one roof, including Patients, Caregivers, Family Members, Friends, Veterans, Advocates, Researchers, Clinicians, Businesses and Nonprofits.
Empowerment is central to ALS.Community. As ALS progresses and changes daily life, the platform gives people with the disease opportunities to lead, make choices and shape the support available to them. Patients have guided its development from the beginning and will continue to help shape its future through their feedback and leadership.
“Patients are driving the bus,” said Jeff Oppenheimer, founder of ALS.Community, “and the roads will never be safe again.”
For Oppenheimer, the mission is deeply personal.
“During my wife Shelbie’s 20-year battle with ALS, she was surrounded by people who loved her, but rarely by people who understood what she was going through,” Oppenheimer said. “It hurts me to this day. What I couldn’t do for her, we’re working to create for people with ALS, as well as family and caregivers who are also isolated by ALS.”
Alongside connection, ALS.Community offers a place to learn, exchange practical tips and share lived experiences.
“Connection is our North Star,” said Chris Howell, president of ALS.Community and a Navy veteran diagnosed with ALS in 2019.
“So much of the learning at ALS.Community comes from sharing lived experiences, but there’s also a reference library with more than 230 topics,” Howell said.
The library’s 11 wings include financial health, caregiving, veterans, family and friends, research, and clinical care. Members can add subjects that are not yet covered, helping the resources grow with the community’s needs.
ALS.Community also seeks to address what it sees as an underserved need for faith-based support. Its spiritual health library includes psalms and prayers, perspectives on how the world’s faiths address living with ALS, guided meditation and gratitude exercises.
“Our tagline is Together We’re Bigger Than ALS, but we think of it as more of a battle cry, a rallying call for everyone touched by ALS to stand together, support one another, and make their voices heard. Exactly how we use it, what it comes to mean, and how it becomes part of our collective identity is, like everything else, up to the members of ALS.Community,” Oppenheimer said. “I can’t wait for the day when we have 33,000 chefs in the kitchen.”
Membership is free. To join the community or donate, visit https://als.community. The platform is also available through iOS and Android app stores on the Mighty Networks app.
Multimedia: Photos, logos and screenshots are available here.
About ALS.Community
Approximately 5,000 people are diagnosed with ALS each year, and roughly 35,000 people are living with the rare, rapidly progressing neurodegenerative disease at any given time, according to the Centers for Disease Control and Prevention’s National ALS Registry. Patients and families often struggle to find comprehensive, patient-centered support resources. ALS.Community addresses this gap by providing free access to peer support, expert guidance and community connection through a mobility-friendly design. Built on the belief that people living with ALS deserve not just a voice but a seat at the table, ALS.Community is run by patients for patients, bringing together people with ALS, caregivers, clinicians, researchers and advocates in one interactive space.
Media contact
Caroline Mickus
Vault Communications
973-580-5185
[email protected]