Status
Not open for further replies.

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,646
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Just got this e-mail from ALSA.

(Why can't the US go in with this with Canada, Aus, NZ and the UK and get a REAL representative database going? Anyway ... this is a good start!)

------------------------------------------------------------------------

A few minutes ago, the House of Representatives passed legislation that will appropriate an additional $6 million for the National ALS Registry at the Centers for Disease Control and Prevention (CDC). This is a 20% increase over last year and demonstrates that Congress has made funding for the Registry a top priority - something that would not have happened without your efforts to contact Congress and tell them why more must be done in the fight against ALS.

The Senate is expected to vote on the bill as early as next week and we will keep you updated as the legislative process continues.

Registry Begins to Collect Data
As we reported earlier this year, the CDC is in the process of identifying ALS cases from throughout the United States utilizing data obtained from national databases, such as Medicare, Medicaid and the Veterans Administration. The Agency also has launched the first phase of the ALS Registry website, CDC - Amyotrophic Lateral Sclerosis. When fully launched in the second half of 2010, the site will enable people with ALS to self enroll in the registry.

However, the additional $6 million in funding provided by Congress not only will allow the CDC to continue its current efforts, but also potentially conduct more robust data collection at the state and local level in order to identify any cases that are not captured through the web portal and national databases.

For additional information about the National ALS Registry, including about the web portal and how people with ALS will be able to enroll in the registry, please click here.

Thank you to everyone who has contacted Congress and helped to make this victory possible!
 
Just got this e-mail from ALSA.

(Why can't the US go in with this with Canada, Aus, NZ and the UK and get a REAL representative database going? Anyway ... this is a good start!)

------------------------------------------------------------------------

This is good news Beth. Hurray for the US. The short answer to your question above, at least for Canada, is that the current governing party is headed by a neo-conservative in the mold of GWB. You are expected to look out for yourself. Harper is not likely to squander money on an ALS registry.
 
Oh BethU, we are so in tune and brilliant! Each of us posted this at the same time! lolol
 
What is it they say about great minds? :lol:

John1 ... I hope the neo-cons weren't contagious, like Mad Cow Disease!
 
Now I see the connection, George Bush was from Texas, famous for oil and cattle, Stephen Harper is from Alberta famous for oil, cattle and Mad Cow. :roll::roll:

I agree, we all do need to be part of a registry but I'm not holding my breath.
 
Status
Not open for further replies.
Back
Top