I AM ALS statement on demographic data collection

Hello incredible community, 

We are writing this to respond to community questions about I AM ALS’ demographic data collection. In particular, there have been several frustrations with extensive gender identity and sexual orientation response options on action forms.

First, let us say that diversity, equity, inclusion, and belonging are incredibly important to I AM ALS and the success of our community-led movement. We collect information consistent with best practices and with the goal of reaching and serving the entire ALS community. We have not achieved that, but we will continue to try and improve. 


  1. The platform we use (EveryAction) does not allow us to edit the answers to demographic questions. While they use an exhaustive and very long gender identity response list, they have informed I AM ALS that we cannot edit that list. 
  2. While that feature is not ideal for I AM ALS, this platform is a valuable and affordable option. Because of our commitment to keeping expenses low and impact high, we appreciate cost-efficient options. Part of how we keep costs low is you. You are part of our team. Every time you share a post, you are on our marketing team. Every time you send an email to Congress through I AM ALS, you are on our government relations team. You all have poured hours into this dream of Brian and Sandra’s to change the ALS landscape. To make the community heard and responded to. We could not achieve anything without you. 
  3. We have responded to community feedback by making sexual orientation and ethnicity optional. However, we cannot make gender identity and race optional. We collect this information for the same reason we collect zip codes. This information is necessary for us to measure the success of our programs.
  4. Your answers to these questions are never shared with anyone, nor does I AM ALS look at this information on an individual level. Responses are examined only together in the aggregate. 
  5. Because community member ease of participation – with special attention to those using eye gaze – is a priority to us, we are continuing to look into future improvements.

To save yourself time for now, please check the box next to “Update my FastAction profile with this information” at the bottom of all action forms (see below.) Clicking on this box will save your information and automatically fill out all of your future I AM ALS forms. This means no more typing or scrolling. Just click “Next.”

Thank you for your feedback. We will continue to work on making our forms and processes more efficient for the community and hope that you will continue to share supportive feedback and also help us to explain to others why we collect this information and why we cannot change the answers to demographic questions. 

In solidarity,

We will find cures for ALS. The only question is when. That answer depends on you.

Stay informed on I AM ALS’ progress and what you can do to help us make hope real.

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