Federal Government Launches First Ever National ALS Registry

Historic Project to Advance Lou Gehrig’s Disease Research

NEW YORK, NY (October 20, 2010) – The federal government took a major step today in the fight against Lou Gehrig’s Disease as the Agency for Toxic Substances and Disease Registry (ATSDR) announced the full implementation of the National ALS Registry. Beginning today, people living with Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease) may self enroll in the Registry via a secure online web portal at the Centers for Disease Control and Prevention, www.cdc.gov/als.

For the first time since ALS was discovered in 1869, the National ALS Registry will identify cases of ALS from throughout the United States and collect vital information leading to the cause, treatment and cure of the fatal neurodegenerative disease that took the life of baseball legend Lou Gehrig and which now bears his name.

“I am proud to have taken a lead role in establishing a single national patient registry for ALS,” said Rep Eliot Engel (D-NY-17) who sponsored the bill that created the registry in the House of Representatives. “I thank the ALS Association for their outstanding help in bringing this to fruition. A single national patient registry to collect information on ALS will collect urgently-needed data for research, disease management and the development of standards of care for ALS. The registry will enhance our country’s efforts to find a treatment and cure for ALS. It will bring new hope to thousands of patients and their families, that ALS will no longer be a death sentence.”

Passed by Congress and signed by President Bush in October of 2008, the ALS Registry Act established the first ever national patient registry of people with Lou Gehrig’s Disease. The ATSDR, which is implementing the National ALS Registry, is a federal agency of the U.S. Department of Health and Human Services, a sister agency to the Centers for Disease Control and Prevention.

“While baseball legend Lou Gehrig put a national face on ALS over 65 years ago, my own family was also touched by ALS,” said Engel. “This is a very personal issue for me, and for every person whose life has been affected by this horrible disease.”

The ALS Association has worked closely with Rep Engel since the beginning and are very grateful for his help.

"The entire ALS community is deeply indebted to New York’s Congressman Engel for the important leadership role he has played in this major step in advancing the search for an effective treatment and cure for Lou Gehrig’s Disease," said Dorine Gordon, CEO of The ALS Association Greater New York Chapter.

The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

For more information about The ALS Association, visit www.als-ny.org or call 800-672-8857.