Display in St. Augustine, FL
Park Area in Front of Lightner Museum
Sat. May 16, 2009
9 a.m. – 4 p.m.
75 King Street
Plaza de la Constitucion
Sun. May 17, 2009
9 a.m. – 4 p.m.
48 King Street
Today, patients suffering with Lou Gehrig’s Disease in the St. Augustine, Florida area are celebrating the launch of an awareness campaign they hope will take them one step closer to a cure for their fatal illness. Launching today, Piece by Piece is an innovative campaign meant to bring attention to the devastating disease that has often been overlooked. The campaign uses graphic imagery to portray stolen mannequin parts which act as a metaphor for the destructive effects of Lou Gehrig’s Disease.
Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease, is a progressive neurodegenerative disease that causes its victims to become completely paralyzed, gradually stealing their ability to move any of their limbs. The disease affects motor neurons in the brain and spinal cord. When the motor neurons die, a patient’s muscles waste away. The patient is robbed of the ability to walk, speak, eat, and eventually breathe. Upon diagnosis patients are given only two to five years to live. There is no cure for ALS.
About The ALS Association
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 Florida Chapter, visit our website at www.stealingpieces.org.
Facts You Should Know About ALS
The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
ALS is not contagious.
It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually. More people die every year of ALS than of Huntington’s disease or multiple sclerosis and it occurs two-thirds as frequently as multiple sclerosis.
Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS (two per 100,000 people) is five times higher than Huntington’s disease and about equal to multiple sclerosis. It is estimated that as many as 30,000 Americans may have the disease at any given time.
Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
ALS can strike anyone.
Present treatment of ALS includes one drug, riluzole (Rilutek©) and is aimed at symptomatic relief, prevention of complications and maintenance of maximum optimal function and optimal quality of life. Most of this, in the later stages, requires substantial physical caregiving.
In 1991 a team of ALS Association-funded researchers linked familial ALS to chromosome 21. In 1993 the research team identified a defective SOD1 gene on chromosome 21 as responsible for many cases of familial ALS. Further study indicated over 60 mutations (structural defects) in the SOD (superoxide dismutase) enzyme which alters the enzyme’s ability to protect against free radical damage to motor neurons. These studies open possibilities for future therapies or strategies to effectively mediate both familial and sporadic ALS. But much more research on the SOD enzyme is needed. Also, researchers have not ruled out other gene involvement (on other chromosomes) in ALS.
There can be significant costs for medical care, equipment and home health caregiving later in the disease. It is important to be knowledgeable about your health plan coverage and other programs for which your may be eligible, including SSA, Medicare, Medical and Veteran Affairs benefits.
Rilutek®, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Rilutek® slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS. Rilutek® is manufactured by Aventis Pharmaceuticals. There is a patient Assistance Program that helps patients who qualify to receive the drug without charge. Many private health plans cover the cost of Rilutek®. Contact your local ALS Association Chapter or the National Office for the Patient Assistance Program resource and more information about access to Rilutek®.
Reports from three separate patient databases described long range experience with Rilutek®. All three reports suggest a trend of increasing survival with Rilutek® over time. More studies that are double blind and controlled are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the Rilutek® clinical trials may be needed to see the long-term survival advantage of the drug. An interesting observation was that despite the fact that the Irish government provides Rilutek® free of charge to people in Ireland with ALS, only two-thirds of the patients registered in the Ireland national ALS database reported taking Rilutek.
(Photos by Judyth Piazza)