ALS.Community recently announced the public launch of its free, patient-led nonprofit online platform, giving people affected by amyotrophic lateral sclerosis, commonly called ALS, a place to build friendships, share practical knowledge and find support. The mission of ALS.Community is to end ALS isolation by connecting people who understand life with the disease. Approximately 200,000 people have ALS globally with that number expected to rise sharply over the next 15 years.
Developed with guidance from people living with ALS, the platform brings patients, caregivers, families and the broader ALS community together in one interactive space. Members help shape its direction through leadership, feedback and the creation of smaller communities centered on their needs. That approach puts the patients and family members navigating ALS at the center of decisions about the support available to them.
For founder Jeff Oppenheimer, the launch fulfills a deeply personal goal: helping others find the understanding his wife, Shelbie, often lacked during her 20 years with ALS.
“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, I’m working to create for people with ALS, as well as family and caregivers who are also isolated by ALS.”
ALS.Community is designed to make those connections easier to find. Members can drop into a Connection Café, attend webinars and watch parties or explore a virtual library, bookstore, art gallery and movie theater. These shared spaces offer opportunities to exchange advice, pursue interests and spend time with people who need no explanation of the challenges ALS can bring.
At the heart of the platform are Communities, dedicated spaces for connection, information and support. Public Communities bring together the entire ALS ecosystem under one roof, with unique Communities for: Patients, Caregivers, Family Members, Friends, Veterans, Advocates, Researchers, Clinicians, Businesses and Nonprofits. Personal Communities offer more focused connections based on shared interests, experiences or geography.
Like-minded groups can create a Personal Community around needs such as navigating motherhood with ALS, caring for a spouse or finding others in close geographic proximity. A few pioneering Personal Communities have already formed at ALS.Community. Forever a Parent: A Gentle Space After ALSwas established by parents bereaved by ALS. “Creating this community for other parents is a way to honor the grief and love I have for my daughter, Marissa,” said member Lou Morentin. “I hope other parents will join us and share stories, laugh, cry and honor the children they have lost to this devastating disease.” Marissa’s ALS journey ended at age 32.
Practical learning is another core part of the platform. A reference library covers more than 230 topics across 11 subject areas, including financial health, caregiving, veterans, research and clinical care. In the spiritual health library, resources include psalms and prayers, perspectives from different faiths, guided meditation and gratitude exercises.
“Our tagline is Together We’re Bigger Than ALS, but we think of it as a battle cry and rallying call for everyone touched by this disease to stand together, support one another, and make their voices heard,” Oppenheimer said.
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