ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, December 11, 2009

ALS Registry Development Funding Continues

Following is a statement issued yesterday (December 10) by the ALS Association Washington, DC, office:

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. 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 https://ssl.capwiz.com/alsa/attachments/2_ALS_Registry_Update__Dec_2009_.pdf

Thank you to everyone who has contacted Congress and helped to make this victory possible!

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