To support individuals with ALS and their caregivers by providing useful information and resources to manage the disease with confidence and dignity.
To be the leading resource for individuals with ALS, providing access to quality information and support for everyone, regardless of location, income, or background.
ALSWiki.org sources information from individuals living with ALS, their caregivers and families, and qualified professionals. The topics covered are derived from the challenges that those with ALS face.
ALSWiki.org is not affiliated with any corporation or government institution. This allows ALSWiki.org to cover topics in a manner that is less generic, or restricted to a specific region. It also allows for a broader scope across subjects such as finance and occupational therapy, which would likely not be covered by a medical institution's publications.
ALSWiki.org is actively maintained; other publications can go months or years without being updated.
Social media sites and forums are subject to significant churn, which makes finding content difficult. ALS-specific content also lives among all other irrelevant content on the given platform. Content can be lost forever if the authors close their accounts or pass away. ALSWiki.org has a content corpus that is discoverable, easily navigable, and is preserved over the course of time.
ALSWiki.org is actively seeking medical professionals to review the content.
Yes, ALSWiki.org does use AI tools for content. Bulk data such as those found in reference tables may be generated using AI tools. Content submissions from humans that are written in the wrong tense or perspective may be passed through an AI tool to make those corrections.
ALSWiki.org does not use AI to generate content as a replacement for humans as it may be inaccurate or derived from incredible sources. Any content that appears to be inaccurate for any reason should be reported.
ALSWiki.org is financed by donations and the very small profits earned from selling products.
ALSWiki.org is presently only available in English. Spanish translations are underway.
Individuals looking to provide translations in other languages should contact ALSWiki.org.
The organization itself is based in Canada. The servers are located in the United States and other regions.
The concept was first documented in late 2023; active development began in March 2024.
ALSWiki.org was founded by a Canadian man that was diagnosed with ALS at age 38 in early 2023. Other individuals contribute to the content and maintain the site.
ALSWiki.org is a federally incorporated nonprofit organization in Canada.
ALSWiki.org is not a registered charity and does not operate as one. Operating as a registered charity brings with it increased costs, which cannot be justified at this time.
| Date | Event |
|---|---|
| Q4 2023 | ALSWiki.org concept created. |
| March 21, 2024 | Domain name purchased, development started. |
| May 23, 2024 | Site made publicly available, but not widely publicized. |
| July 10, 2024 | Some initial publicity efforts. |
| November 1, 2024 | ALSWiki.org is incorporated as a Canadian federal nonprofit. |
| June 1, 2025 | ALSWiki.org becomes an affiliate member of the International Alliance of ALS/MND Associations. |
| August 4, 2025 | ALSWiki.org launches ALSFRS-R.net. |