Advocacy and Public Policy Updates View Archived Updates
Help Increase Funding for the National ALS Registry March 9, 2010 We need your help TODAY to increase funding for the National ALS Registry.  U.S. Representatives Eliot Engel (D-NY) and Lee Terry (R-NE) are circulating a letter requesting the House Appropriations Committee provide $10 million in funding for the Registry next year.  We urge you to contact your Representatives today to request that they sign onto this critical letter and support their constituents in the fight for a treatment and cure for Lou Gehrig's Disease.   The text of the Engel-Terry "Dear Colleague" letter is available by clicking here. Read full story >>
National ALS Registry Update and Timeline February 19, 2010 Thanks to the outreach of advocates across the country to secure $6 million in Congressional funding for the National ALS Registry in 2010, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is preparing to fully implement the National ALS Registry later this year.  In fact, every person with ALS in the country is expected to be able to self enroll in the registry this year via an online web portal and provide information that will help to advance the search for a cause, treatment and cure for ALS. In the meantime, The ALS Association is working closely with the CDC/ATSDR to take the steps that are necessary to fully implement the registry as soon as possible.   Several vital activities will be taking place in the coming months and we are pleased to share with you a timeline that outlines what will be happening. The timeline is available here. Read full story >>
Tremendous Success Achieved in 2009 January 2010 The 2nd session of the 111th Congress is underway and The ALS Association once again is leading the fight, advocating for increased funding and support for ALS research and patient services. However, we would like to take this opportunity to thank you for your outstanding efforts in 2009. Together we have realized significant advocacy victories that are continuing to create the roadmap that will lead to a treatment and cure for Lou Gehrig's Disease. Listed below are a few of our 2009 successes, which could not have been achieved without your active participation in our advocacy programs. While you may have received updates throughout the year on each individual success as it occurred, you likely have not seen a single list that shows the breadth of what we accomplished together. Clearly we are making a difference! The victories below demonstrate what can happen when we tell the ALS story and let Congress know that more must be done in the fight against ALS!  Read full story >>