Free online platform launches to support people living with ALS
ALS.community's new network aims to connect patients, their families, caregivers
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- ALS.Community has launched a free online platform to connect patients, families, and caregivers.
- The platform features discussion groups, virtual events, and educational resources.
- It also offers people the opportunity to share experiences and find practical support.
ALS.Community has launched a new free online platform to help people with amyotrophic lateral sclerosis (ALS), their families, and caregivers connect with others, share experiences, and find practical support.
Developed with input from people living with ALS, the patient-led nonprofit platform offers discussion communities, virtual events, educational resources, and opportunities for members to help shape the services available to them.
Membership is free, and the platform is available through ALS.Community’s website or the Mighty Networks app, available for iOS and Android devices.
“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,” Jeff Oppenheimer, founder of ALS.Community, said in a press release from the nonprofit. “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.”
Dedicated communities at center of platform
ALS is marked by progressive muscle weakness that increasingly affects patients’ ability to move, speak, swallow, and breathe. As the disease advances, people often become more dependent on others for daily activities, and communication difficulties and reduced mobility can also contribute to social isolation.
ALS.Community aims to help address these challenges by bringing people affected by the disease together in a space where they can exchange information and connect with others who have similar experiences.
At the center of the platform are dedicated communities, where members can connect, exchange information, and support one another. Public communities are available for patients, caregivers, advocates, researchers, clinicians, and nonprofit organizations, among others.
Members can also create personal communities focused on specific needs, shared interests and experiences, or to connect with others in close geographic locations.
Creating this community for other parents is a way to honor the grief and love I have for my daughter, Marissa.
One such group, “Forever a Parent: A Gentle Space After ALS,” was created to support parents grieving the loss of a child to the disease. Its founder, Lou Morentin, lost his daughter, Marissa, to ALS at age 32.
“Creating this community for other parents is a way to honor the grief and love I have for my daughter, Marissa,” Morentin said.
Beyond discussion groups, the platform provides virtual activities, including gatherings at a Connection Café, webinars, and watch parties. Additional features include an ALS Media Guide with books, documentaries, movies, podcasts, and music about ALS, as well as a virtual art gallery and movie theater.
In addition to social activities, ALS.Community also offers educational resources to help patients and caregivers navigate the practical aspects of living with ALS. Its reference library covers more than 230 topics across 11 subject areas, including caregiving, financial health, clinical care, research, and spiritual health.
The platform also has a mobility-friendly design intended to make participation more accessible to people experiencing physical limitations associated with ALS.
“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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