CDC National ALS Registry

[momap53]

First Anniversary of National ALS Registry
Centers for Disease Control and Prevention
ATSDR celebrates the first year of the National ALS Registry. The goal of the registry is to help scientists learn more about ALS. Help us defeat ALS!

This article appeared in my FaceBook CDC news feed this morning.
Please make sure all PALS are registered!

Deb

 

[TedH5]

You will not believe what I learned yesterday at our walk. In talking with Greco Johnson from the CDC about raising awareness for the registry he explained to me that they had made some PSA's with some PALS but some people higher up in the gov't would not let them air the commercials. The reason why; because they said it was recruiting patients to sign up for the registry and they are not allowed to recruit PALS to sign up!? What then is the purpose of the registry if you are not aggressively recruiting patients to sign up? Just another example of bureaucratic incompetence!