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Murkowski Comments on Launch of National ALS Registry

Federal Government Launches First Ever National ALS Registry Historic Project to Advance Lou Gehrig’s Disease Research

WASHINGTON, DC (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 (ALS), commonly known as 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.

“This truly is an historic day in the continuing search for a treatment and cure for ALS,” said Jane H. Gilbert, president and CEO of The ALS Association.  “The launch of the web portal empowers every single person with ALS in the country with the ability to play a direct role in the research that will help put an end to Lou Gehrig’s Disease.   We are proud to join with the ATSDR in this landmark effort.”

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.

“ATSDR is excited to be involved in such an important effort” states Christopher J. Portier, Ph.D., Director of ATSDR. “Through this registry, we will be able to develop a more accurate picture of who has ALS.  Such information could prove critical in the search for the causes of this fatal disease.”

The ALS Registry Act was introduced in Congress by Senate Majority Leader Harry Reid (D-NV) and Representative Eliot Engel (D-NY) and signed into law by President Bush in October of 2008.   The bill authorized 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, and a sister agency to the Centers for Disease Control and Prevention.

“ALS is a devastating illness for patients and their loved ones.  I am so pleased that the ALS Registry that was created by our bill is now operational,” said Senate Majority Leader Harry Reid.  “This registry is an important new tool that offers the hope that researchers will discover better ways to prevent, treat or even cure ALS.”

Congressman Eliot Engel, who introduced the ALS Registry Act in the House of Representatives, knows first hand how important the Registry is to the patients and families living with ALS today as his grandmother Dora Engel is believed to have passed away from ALS.  “While baseball legend Lou Gehrig put a national face on ALS over 65 years ago, my own family was also touched by ALS,” said Congressman Engel.  “This is a very personal issue for me, and for every person whose life has been affected by this horrible disease. I am proud to have taken a lead role in establishing a single national patient registry for ALS, and I thank The ALS Association for their outstanding help in bringing this to fruition.”

“For the past six years, The Association and advocates across the country worked closely with Members of both chambers of Congress supporting the introduction and passage of the ALS Registry Act and encouraging funding for the Registry,” said Jay Daugherty, Chairman of The ALS Association Board of Trustees.  “The ALS Registry has the potential to become the single largest ALS research project ever created and is a powerful new tool that will help us solve the mysteries of this disease.”

"For those with ALS, for those who care for a loved one with ALS and to those we have lost to ALS, our first success was enacting the ALS Registry into law,” said Senator Lisa Murkowski, a strong supporter of the ALS Registry who has a cousin with ALS.  “But with the launch of the web portal today, we are now one step closer to gathering all the pieces, putting the puzzle together and finding a treatment and a cure for ALS.  To everyone that helped make this possible, especially all those who have been touched by ALS, today is a great day.”

“It has been more than 70 years since Lou Gehrig gave his name to this disease,” said Gilbert.  “With the full implementation of the registry, every person with ALS across the country now can give their name to find a treatment and cure.”

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.

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