[Congressional Record Volume 154, Number 153 (Thursday, September 25, 2008)]
[House]
[Pages H9922-H9923]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




      SUPPORTING THE GOALS AND IDEALS OF TAY-SACHS AWARENESS MONTH

  Mr. PALLONE. Madam Speaker, I move to suspend the rules and agree to 
the resolution (H. Res. 1333) supporting the goals and ideals of Tay-
Sachs Awareness Month, as amended.
  The Clerk read the title of the resolution.
  The text of the resolution is as follows:

                              H. Res. 1333

       Whereas Tay-Sachs disease is a rare, genetic disorder that 
     causes destruction of nerve cells in the brain and spinal 
     cord due to the poor functioning of an enzyme called beta-
     hexosaminidase A;
       Whereas there is no proven treatment or cure for Tay-Sachs 
     disease, which is always fatal in children;
       Whereas the disorder was named after Warren Tay, an 
     ophthalmologist from the United Kingdom, and Bernard Sachs, a 
     neurologist from the United States, both of whom contributed 
     to the discovery of the disease in 1881 and 1887, 
     respectively;
       Whereas Tay-Sachs disease often affects families with no 
     prior history of the disease;
       Whereas approximately 1 in 27 Ashkenazi Jews, 1 in 30 
     Louisianan Cajuns, 1 in 30 French Canadians, 1 in 50 Irish 
     Americans, and 1 in every 250 people are carriers of Tay-
     Sachs disease;
       Whereas approximately 1,200,000 Americans are carriers of 
     Tay-Sachs disease;
       Whereas these unaffected carriers of the disease possess 
     the recessive gene that can trigger the disease in future 
     generations;
       Whereas if both parents of a child are carriers of Tay-
     Sachs disease, there is a 1 in 4 chance that the child will 
     develop Tay-Sachs disease;
       Whereas a blood test can determine if an individual is a 
     carrier of Tay-Sachs disease, and those citizens who are 
     members of high-risk populations should consider being 
     screened; and
       Whereas heightened awareness and continued research efforts 
     are the best ways to find a treatment for this horrific 
     disease: Now, therefore, be it
       Resolved, That the House of Representatives supports the 
     goals and ideals of Tay-Sachs Awareness Month and encourages 
     and supports education and research efforts with respect to 
     Tay-Sachs disease.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New 
Jersey (Mr. Pallone) and the gentleman from Georgia (Mr. Deal) each 
will control 20 minutes.
  The Chair recognizes the gentleman from New Jersey.


                             General Leave

  Mr. PALLONE. Madam Speaker, I ask unanimous consent that all Members 
may have 5 legislative days to revise and extend their remarks and 
include extraneous material on the resolution under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from New Jersey?
  There was no objection.
  Mr. PALLONE. Madam Speaker, I yield myself such time as I may 
consume.
  Madam Speaker, I rise in support of H. Res. 1333, Supporting the 
Goals and Ideals of Tay-Sachs Awareness Month.
  Tay-Sachs is a rare genetic disorder that causes destruction of nerve 
cells in the brain and spinal cord. It usually develops in infants and 
leads to blindness and paralysis before ultimately giving way to death. 
Unfortunately, there is presently no treatment or cure for this 
disease.
  The resolution before us today supports education and continued 
research efforts to combat Tay-Sachs disease so that one day we may 
find a cure.
  I want to thank my colleague, Representative Arcuri from New York, 
for his work in raising this important issue. I know this issue is 
close to his heart and I want to express my gratitude to him.
  I urge my colleagues to support this important resolution.
  I reserve the balance of my time.
  Mr. DEAL of Georgia. Madam Speaker, I too rise in support of this 
legislation. Presently, there is no treatment for Tay-Sachs disease. 
But I would like to thank the National Institute of Neurological 
Disorders and Stroke for their efforts to reduce the burden of 
neurological disease. They are part of the National Institutes of 
Health, and they conduct research on this particular disease in 
laboratories at NIH, and also support additional research through 
grants to major medical institutions across the country.
  It is important for us to understand and to become more aware of this 
particular problem, and that's what this legislation seeks to do. I 
would urge its support.
  I yield back the balance of my time.
  Mr. PALLONE. Madam Speaker, I yield 2 minutes to the gentleman from 
New York (Mr. Arcuri).
  Mr. ARCURI. Madam Speaker, I rise today in strong support of House 
Resolution 1333, which recognizes this September 2008 as Tay-Sachs 
Disease Awareness Month. I am proud to cosponsor this resolution, and I 
commend my friend from Ohio, Senator Brown, for spearheading a 
companion resolution in the Senate.
  Tay-Sachs Disease is a progressive neurological disorder for which 
there is no treatment or cure. The most common form of it affects 
infants who appear healthy at birth and seem to develop normally at 
first; but at around 6 months, symptoms of the disease begin to appear. 
The baby gradually begins to regress, losing the ability to crawl, turn 
over, sit or reach out. Eventually, as paralysis sets in, the child 
becomes blind, deaf and unable to swallow. Tragically, few infants born 
with Tay-Sachs live past the age of 5.
  This terrible disease appears most often in families with no prior 
history because the Tay-Sachs gene can be carried through many 
generations without being expressed. However, when two carriers of the 
gene become parents, there is a 1-in-4 chance that any child they have 
may be born with the disease.
  While about 1.2 million Americans are carriers of the Tay-Sachs gene, 
certain populations are at much higher risk. About 1 in 30 American 
Jews, 1 in 50 Irish Americans is a carrier. French Canadians, Louisiana 
Cajuns, Pennsylvania Dutch are high risk populations, but all 
populations are at risk.
  It's easy to reduce this terrible disease like Tay-Sachs to 
statistics, but there are real human stories behind these statistics 
that must not be overlooked. My wife's son, Joey Deon, was born a 
happy, healthy and all around pleasant baby. There was no warning he 
would be afflicted by this terrible disease. But at the age of 1 he 
began to show symptoms. His mother, like many other parents of children 
with Tay-Sachs, was forced to watch a once active, healthy baby slowly 
lose his bodily functions.

                              {time}  1700

  God came to claim his angel in his sleep one day before his 5th 
birthday. Thankfully, he did not suffer as many with this disease do 
suffer.
  The SPEAKER pro tempore. The time of the gentleman has expired.
  Mr. PALLONE. I yield the gentleman an additional 2 minutes.
  Mr. ARCURI. He did not suffer, but very often children afflicted with 
this disease suffer badly before death.
  Madam Speaker, a simple blood test can identify carriers of the Tay-
Sachs gene before they have children. But very few people, including 
those in high-risk populations, are aware of its

[[Page H9923]]

availability. This critical test can identify carrier couples before a 
tragedy occurs. Raising awareness of this terrible disease is 
important, but it is critical that we also put the words into actions.
  Millions of Americans who suffer from rare diseases like Tay-Sachs 
and more common diseases like cancer stand to benefit from an expanded 
Federal commitment to stem cell research. We must also continue to 
increase funding for the National Institutes of Health. Federal support 
for cutting-edge biomedical research will make treatments and cures for 
diseases like Tay-Sachs a reality.
  I urge my colleagues to support House Resolution 1333 and Tay-Sachs 
Awareness Month.
  Mr. PALLONE. Madam Speaker, I have no further speakers, and I would 
urge support of the legislation.
  I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from New Jersey (Mr. Pallone) that the House suspend the 
rules and agree to the resolution, H. Res. 1333, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the resolution, as amended, was agreed to.
  A motion to reconsider was laid on the table.

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