[Congressional Record Volume 152, Number 63 (Friday, May 19, 2006)]
[Extensions of Remarks]
[Page E915]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


[[Page E915]]
                    RECOGNIZING ALS AWARENESS MONTH

                                 ______
                                 

                   HON. CHARLES W. ``CHIP'' PICKERING

                             of mississippi

                    in the house of representatives

                          Friday, May 19, 2006

  Mr. PICKERING. Mr. Speaker, this week I met with Steve Kennedy and 
Kyle Robertson, both from my home county of Jones County, Mississippi. 
We discussed ALS--also known as Lou Gehrig's Disease--funding and 
awareness. May is ALS Awareness Month and an opportunity for us to 
increase knowledge about this fatal, neurodegenerative disease that 
attacks nerve cells and pathways in the brain and spinal cord. When 
these cells die, voluntary muscle control and movement ends and 
patients in later stages are totally paralyzed, often despite sharp and 
alert minds.
  Steve Kennedy's father, Dr. Larry Kennedy, is the president of 
William Carey College--an excellent Baptist university in Mississippi. 
Dr. Kennedy was diagnosed with ALS in July of 2005 and had planned to 
announce his condition in September, until Hurricane Katrina ravaged 
the school, destroying the entire Gulf Coast Campus and closing the 
nursing school in New Orleans. After shepherding the school through 
that natural disaster, Dr. Kennedy again put off his announcement 
rescheduled for December of 2005 when the college was presented with a 
generous contribution. Dr. Kennedy delayed his personal concerns again, 
so as not to detract from the news of the gift. He finally announced 
his condition in the Spring of 2006. President George W. Bush greeted 
Dr. Kennedy and recognized his sacrifice during his recent visit to 
Mississippi.
  Dr. Kennedy is an example of a man facing a deteriorating disease 
with class and dignity and resolve. He reminds us that anyone can be 
afflicted by this condition which has no currently known cause, cure or 
means of prevention. Only one drug currently is available to even treat 
this disease and it only prolongs life a few months. During ALS 
Awareness Month, I am advocating greater research investments into ALS.
  Every day, on average 15 people are newly diagnosed with ALS--more 
than 5,400 people per year. The average life expectancy of a person 
with ALS is two to five years from time of diagnosis. ``With recent 
advances in research and improved medical care, patients are able to 
have longer, more productive lives. But we have much left to learn 
about this mysterious and deadly disease.''
  Mr. Speaker, I hope Congress will include $5 million in the FY 2008 
Federal Budget to establish a national ALS registry at the Centers for 
Disease Control and Prevention, and to enact the ALS Registry Act. This 
will help identify occurrences of ALS, collect data surrounding it and 
examine standards of care. Promoting a better understanding of the 
disease will enhance the nation's efforts to find a treatment and cure. 
With studies indicating that ALS occurs at a greater rate in military 
veterans, I encourage the Department of Defense to investigate the 
causes and take appropriate remedial action to prevent the development 
of this disease among our fighting men and women. Now is the time for 
us to invest in seeking the causes, treatments and a cure for this 
disease.

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