Please take a moment to read this report which was presented by a gentleman with ALS to some of the leaders of the U.S. National ALS Registry this week. It contains important data and perspectives related to the awareness of the ALS Registry.
Every person with ALS needs to know the "what, when, why" of the National ALS Registry. There are three important action items for each person diagnosed with ALS --
- Self-enroll at http://www.cdc.gov/als
- Complete the six additional Risk-factor Surveys
- Complete the Ouality of Life updates at regular intervals
The message has been lost in the muddle of stuff that families hear in the first weeks after diagnosis. Or has the message been delivered at all?
Taxpayers have spent millions and millions and millions of dollars on this project. It's an important improvement over the decades when clues from people with ALS were buried with them. The least we can do is get the message to people diagnosed with ALS clearly so that their data will be retained.
It's a matter of getting the right message to the right people at the right time.
And you don't fix poor signage by buying more signs to add to the message clutter.