[Congressional Record (Bound Edition), Volume 155 (2009), Part 17]
[House]
[Pages 22982-22983]
[From the U.S. Government Publishing Office, www.gpo.gov]




                              {time}  1145
                  SUPPORTING TAY-SACHS AWARENESS MONTH

  Mr. PALLONE. Mr. Speaker, I move to suspend the rules and agree to 
the resolution (H. Res. 692) 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. 692

       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 
     hexosaminidase A;
       Whereas there is no proven treatment or cure for Tay-Sachs 
     disease, which is usually 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 1,500,000 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 simple and inexpensive blood test can determine 
     if an individual is a carrier of Tay-Sachs disease, and 
     screening for this disease should be available when 
     clinically indicated; and
       Whereas heightened awareness and public-private 
     partnerships to find a treatment are effective ways to combat 
     this horrific disease: Now, therefore, be it
       Resolved, That the House of Representatives supports the 
     goals and ideals of Tay-Sachs Awareness Month and supports a 
     public-private partnership for 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 Nebraska (Mr. Terry) each 
will control 20 minutes.
  The Chair recognizes the gentleman from New Jersey.


                             General Leave

  Mr. PALLONE. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days in which to revise and extend their remarks 
and include extraneous material in the Record.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from New Jersey?
  There was no objection.
  Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I rise in support of House Resolution 692, supporting 
the goals and ideals of Tay-Sachs Awareness Month. Tay-Sachs disease is 
a very rare genetic disorder that leads to the destruction of nerve 
cells in the brain and spinal cord. The disease is prevalent in 
Ashkenazi Jews, French Canadians, Louisianan Cajuns, and Irish 
Americans. One in 250 Americans are carriers of the disease. If both 
parents are carriers, there's a one in four chance that a child born 
will suffer from Tay-Sachs.
  This is a terrible and unforgiving disease that strikes so early in 
life the victims don't have much of a chance. As young as 6 months old, 
children start presenting symptoms. They stop developing and start 
losing motor and mental skills, ultimately leading to paralysis and 
death. There's no treatment that can stop the progression of this 
disease. There's no cure. Because of this, Tay-Sachs is always fatal. 
Most children do not survive past the age of 4.
  Prevention is the only remedy, and that can be accomplished through 
education and information. A simple blood test can indicate if a person 
is a carrier. With this knowledge, parents can be better prepared and 
aware of the chances that they have a child with this terrible disease.
  The resolution before us today supports heightened awareness about 
and increased research on this disease. I'd like to thank my colleague, 
Representative Arcuri, for his work in raising this important issue. I 
urge my colleagues to pass this resolution.
  Mr. Speaker, I reserve the balance of my time.
  Mr. TERRY. Mr. Speaker, I yield myself such time as I may consume.
  I rise today in support of House Resolution 692, recognizing 
September as Tay-Sachs Awareness Month. Tay-Sachs disease affects the 
lives of almost 1.5 million Americans who are carriers of the disease.
  Infants are the most vulnerable to this disease. They appear to 
develop normally for the first few months of life, but then, as nerve 
cells become distended with fatty material, a relentless deterioration 
of mental and physical abilities occurs. These helpless children then 
become blind, deaf, and unable to swallow. Muscles begin to atrophy. 
Paralysis sets in. Even with the best of care, children with Tay-Sachs 
disease usually die by the age of 4 from recurring infections.
  A much rarer form of the disorder occurs in patients in their 
twenties and early thirties and is characterized by an unsteady gait 
and progressive neurological deterioration.
  Unfortunately, the incidence of Tay-Sachs is particularly high among 
people of Eastern European and Ashkenazi Jewish descent. Patients and 
carriers of Tay-Sachs disease can be identified by a simple blood test. 
Parents of high-risk populations are encouraged to have their children 
screened for this gene.
  Presently, there is no treatment for Tay-Sachs disease, but I would 
like to recognize the National Institute of Neurological Disorders and 
Strokes for their efforts to reduce the burden of this neurological 
disease. NINDS is part of the National Institutes of Health and 
conducts research on Tay-Sachs disease in laboratories at the NIH and 
also supports additional research through grants to major medical 
institutions across the country.
  I encourage all of my colleagues to vote in favor of this resolution, 
Mr. Speaker, and reserve the balance of my time.
  Mr. PALLONE. Mr. Speaker, I yield 4 minutes to the sponsor of this 
legislation, the gentleman from New York (Mr. Arcuri).
  Mr. ARCURI. I thank the gentleman from New Jersey for recognizing me.
  Mr. Speaker, I rise today in strong support of House Resolution 692, 
which recognizes this September 2009 as Tay-Sachs Disease Awareness 
Month. I'm proud to cosponsor this resolution, and I commend my friend 
from Ohio, Senator Sherrod Brown, for spearheading a companion 
resolution in the Senate.
  Tay-Sachs disease is a progressive neurological disorder for which 
there is no known treatment or cure. The most common form affects 
infants who appear healthy at birth and seem to develop normally at 
first, but at around 6 months the 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

[[Page 22983]]

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 one-in-four chance that any child they 
will have will be born with the disease.
  While about 1.5 million Americans are carriers of the Tay-Sachs gene, 
certain populations are much more at risk. About 1 in every 30 American 
Jews and 1 in 50 Irish Americans is a carrier. French Canadians, 
Louisiana Cajuns, and Pennsylvania Dutch are also high-risk 
populations.
  It is easy to reduce this terrible disease like Tay-Sachs to 
statistics, but there is a human story behind statistics that we must 
not overlook. My wife's son, Joey Deon, was born a happy, healthy 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 parents of children with Tay-Sachs, was the 
first to notice that something was wrong. She sat through many tests 
and the awful day they were told that Joey had Tay-Sachs. She was 
forced to watch a once active healthy, happy baby slowly lose sight, 
hearing, and muscle control.
  Joey passed away in his sleep 1 month before his fifth birthday. We 
were thankful he died peacefully in his sleep shortly after his mother 
held him and fed him for the last time. Not all deaths from Tay-Sachs 
are peaceful. Some can be quite long and agonizing.
  Mr. Speaker, a simple blood test can identify carriers of Tay-Sachs 
genes before they have children, but very few people, including those 
in high-risk populations, are aware of the availability of this test. 
This critical and relatively inexpensive test can identify carrier 
couples before the tragedy occurs. It is a test that my own health 
insurance, incredibly, did not cover, and I had to pay for myself. But 
it's a test that primary care physicians should be aware of and discuss 
with high-risk populations.
  Raising awareness of this terrible disease is important, but it is 
critical that we also put words into actions. Millions of Americans 
suffering 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.
  Mr. Speaker, I urge my colleagues today to support House Resolution 
692 and Tay-Sachs Disease Awareness Month.
  Mr. KLEIN of Florida. Mr. Speaker, I rise today in strong support of 
H. Res. 692, supporting the goals and ideals of Tay-Sachs Awareness 
Month, and I thank my good friend from New York, Mr. Arcuri, for 
introducing this important resolution, as well as all of my colleagues 
who, like me, have added their name as a cosponsor.
  Tay-Sachs disease is a rare, genetic disorder that lacks a proven 
treatment or cure. It attacks the nerve cells in the brain and spinal 
cord of children with fatal results. The deterioration starts at 6 
months of age and usually ends with death by age four.
  Everyone in this distinguished chamber would agree that this fate 
should never fall on a child or the parents. Yet this genetic disease 
disproportionately impacts specific ethnic groups. Approximately 1 in 
27 Ashkenazi Jews, 1 in 30 Louisianan Cajuns, 1 in 30 French Canadians, 
and 1 in 50 Irish Americans are carriers of this gene. If the parents 
of a child are both carriers of Tay-Sachs disease, then the child has a 
1 in 4 chance of developing the disease.
  My wife, Dori, and her family were personally affected by this 
terrible disease. Both parents were carriers, and as a result, my 
wife's sister developed Tay-Sachs as a baby. It was a terrible tragedy 
to see a life so young taken from them, and it's a reminder to me that 
our work here in the United States Congress must include a long-term 
commitment to curing diseases like Tay-Sachs, so every child can have 
an opportunity to grow up and live the American Dream.
  H. Res. 692 will help in this crusade by bringing important attention 
to Tay-Sachs disease and supporting the goals and ideals of Tay-Sachs 
Awareness Month. I thank the lead sponsor, Mr. Arcuri, again for 
introducing this important resolution and urge its passage.
  Mr. TERRY. Mr. Speaker, we have no further speakers, and so I'm 
prepared to yield back the balance of our time.
  Mr. PALLONE. Mr. Speaker, I, too, have no additional speakers, so I 
would yield back the balance of my time and ask for passage.
  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. 692, as amended.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds 
being in the affirmative, the ayes have it.
  Mr. PALLONE. Mr. Speaker, on that I demand the yeas and nays.
  The yeas and nays were ordered.
  The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the 
Chair's prior announcement, further proceedings on this motion will be 
postponed.

                          ____________________