By Linda Kreider
April 21, 2010
ALS National Awareness Month and the 2010 National ALS Advocacy Day and Public Policy Conference are a time when the voice of the entire ALS community will be heard. Advocates from ALSA chapters, people with ALS and their loved ones will join in the Capitol for the annual National ALS Advocacy Day and Public Policy Conference. Highlights of the three day event include "The Annual Candlelight Vigil," and meeting with legislators on National ALS Advocacy Day. The theme of this year's event is "Road Map to a Cure." This is the 25th anniversary of ALSA
Among the signature accomplishments of our Advocacy and Public Policy Department are: enactment of the ALS Registry Act to establish the first central database that will identify cases of ALS throughout the United States and collect comprehensive information about the disease never before collected on a nationwide scale. The registry, signed into law by President Bush on October 8, 2008, will be administered by the Centers for Disease Control and Prevention/Agency for Toxic Substance and Disease Registry and may become the single largest ALS research project ever created, advancing research, promoting a better understanding of the disease and improved standards of care while potentially revealing clues about ALS's causes. Members of Congress lauded The Association's leadership in passing the bill, which cleared the Senate by unanimous consent and passed the House by a vote of 415-2.
Look at the clock in your office. Glance at your watch periodically.
Set a timer in your kitchen or an alarm on your cell phone.
Every 90 minutes, someone in America is diagnosed with ALS.
Every 90 minutes, someone in America dies from ALS.
Baseball legend Lou Gehrig lent his name to the disease in 1939 when he was diagnosed. Today,over sixty years later, 30,000+ Americans are fighting for their lives against amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease. ALS is a fatal neuromuscular disease that destroys the ability of the brain to communicate with the muscles.
Symptoms include muscle weakness or stiffness. Eventually, all muscles including those that control vital functions such as speech, swallowing and respiration become paralyzed. The brain is unaffected. ALS can strike anyone at any age. Men and women are affected in nearly equal proportion.
Life expectancy is typically 2-5 years with about 50% living at least three years after diagnosis, 20% living for five years and 10% surviving 10 or more years. The ALS Association is the only voluntary organization dedicated solely to the service of people with ALS and their families, and finding a cure or treatment for the disease. Learning the cause and cure of this disease has eluded researchers for more than 100 years. But today there is hope. In the early 1990s, science and technology began to unlock some of the answers. Research proposals from around the world are aggressively solicited, selected and funded by The ALS Association.
Scientific workshops sponsored by the association attract more neuroscientists to ALS and foster collaborative efforts. Although there is not yet a cure for ALS, much can be done to alleviate symptoms. Physical therapy, rehabilitation techniques and assistive devices help people deal with weakness caused by the disease. These therapies can help those living with ALS lead productive and independent lives.
Received April 18, 2010 - Published April 21, 2010
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