Thursday, October 09, 2008

President Signs ALS Registry Act!

(From the ALS Association)

President Bush signed the ALS Registry Act into law late today. Our victory is now official!

It has been a long difficult fight, and we want to thank everyone who continuously reached out to their Members of Congress throughout the legislative process to make this victory possible. You have made a difference!

We are now prepared to take the next steps in partnering with the government to build the registry. However, we need you to continue to stay involved. That's because we must work with Congress to secure funding for the registry. Over the past three years, The ALS Association has worked with Congress to appropriate nearly $5 million to launch registry pilot projects, but much more will be needed in order to expand upon these projects and begin to collect information on a broader scale.

We will keep you updated on the latest developments. In the meantime, please remember to thank your Members of Congress! Let them know that the ALS community appreciates their support in the fight for a treatment and cure. Thank you letters you can send are available in the Advocacy Action Center of our website: http://capwiz.com/alsa/home/.

Once again, thank you and congratulations to everyone. GREAT JOB!

1 comment:

Rita said...

I'm glad I came across your blog. God directs me in mystereous ways & this time I found you going through Rosie O'Donnell's blog...Just kept on searching & here you are...I've recently been watching The View (I'm not sure why) wondering about Rosie...then blogs, etc. Short story is the ALS connection. I cared for & lost my 37 year old son to this fugly disease at Christmas time in 2003 after 2 1/2 years of misery for him & our family. There will be a way to stop it & Advocacy is our vessel on this journey. Thanks for what you do. Keep talking about it & so will I. The researchers are finially working "together" towards a solution. I know they're finding answers all the time. God Bless you and your efforts