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Dear People with ALS in the US (or caregivers who can respond for them), This short survey is provided by a volunteer group working with the CDC ALS Registry on improvements to the project. Your responses will be a huge help. Thank you. CDC ALS Registry Survey

There is no reason that a clinical trial can 't get 5 stars on the PaCTD scale and still deliver excellent science. In fact, if more sponsors paid attention to some of the items in the PaCTD standards, they would actually do better when it comes to delivering the scientific truth quickly and...

The PaCTD rating system explained -- https://iamals.org/wp-content/uploads/2020/07/PaCTD-Page-8.pdf

This was executed as a completely volunteer effort by an ALS caregiver and people w ALS and other caregivers. They wanted to provide a dashboard with information on promising therapies that would save others, especially the newly diagnosed, hours of searching. There is also a PaCTD clinical...

Two bills were introduced in US last week and need your help to move them ahead asap. Thanks if you can read and act and spread the word. They are bipartisan and are designed to help provide paths and resources that can move ALS therapy candidates forward more quickly. These came largely from...

One of the purposes of this project is to let advocates show their legislators the impact of ALS in their districts. Unfortunately there are some zip codes that straddle two Congressional districts. That was the reason that the input had to drill down to an address; however, I AM ALS made sure...

If you search for #EveryCommunity on social media, you'll see quite a few of them promoting the effort.

This is an advocacy project in conjunction with other ALS organizations. Contact information will not be used for fundraising purposes. You can see the cooperating organizations here Every Community (scroll down).