[Congressional Record Volume 155, Number 114 (Monday, July 27, 2009)]
[House]
[Pages H8842-H8843]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




           SUPPORTING NATIONAL HYDROCEPHALUS AWARENESS MONTH

  Mr. CLAY. Mr. Speaker, I move to suspend the rules and agree to the 
resolution (H. Res. 373) expressing support for designation of the 
month of September as ``National Hydrocephalus Awareness Month''.
  The Clerk read the title of the resolution.
  The text of the resolution is as follows:

                              H. Res. 373

       Whereas Hydrocephalus is a serious neurological condition, 
     characterized by the abnormal buildup of cerebrospinal fluids 
     in the ventricles of the brain;
       Whereas Hydrocephalus may cause head enlargement, blurred 
     vision or blindness, seizures, impaired physical development, 
     learning disabilities, progressive irreversible damage to the 
     nerve cells in the brain, and even death;
       Whereas this serious neurological condition may occur at 
     any age, and affects an estimated 1,000,000 people in the 
     United States;
       Whereas 1 out of every 500 children in the United States 
     are born with hydrocephalus, and the condition is the leading 
     cause of brain surgery in children;
       Whereas more than 375,000 older adults in the United States 
     suffer from hydrocephalus, the condition often goes 
     undetected for years in older adults, causing such problems 
     as difficulty walking and urinary incontinence, and may be 
     misdiagnosed as dementia, Alzheimer's disease, or Parkinson's 
     disease;
       Whereas the standard treatment for hydrocephalus, insertion 
     of a shunt to drain excess cerebral fluid, is a 50-year-old 
     technology that carries multiple risks, including shunt 
     failure, infection, and overdrainage;
       Whereas each year cerebral spinal fluid shunting procedures 
     account for approximately $1,000,000,000 in health care 
     spending in the United Sates alone, with half that amount 
     spent on shunt revisions;
       Whereas more than 40,000 operations for hydrocephalus occur 
     annually in the United States, yet there are fewer than 10 
     centers in the Nation specializing in the treatment of adults 
     with hydrocephalus;
       Whereas although there is no single known cause of 
     hydrocephalus or ways to prevent and cure the condition, with 
     the appropriate diagnosis and proper treatment, individuals 
     with hydrocephalus are able to lead full and productive 
     lives;
       Whereas proper prenatal nutrition during the first weeks of 
     conception can also help reduce the risk of children 
     developing hydrocephalus;
       Whereas a September 2005 conference sponsored by the 
     National Institutes of Health, entitled ``Hydrocephalus: 
     Myths, New Facts, Clear Directions'', resulted in efforts to 
     initiate new, collaborative research and treatment efforts;
       Whereas further research into the epidemiology, 
     pathophysiology, disease burden, and improved treatment of 
     hydrocephalus should be conducted and supported, including 
     the collection and analysis of statistics and data concerning 
     the seriousness of hydrocephalus and its impact on families 
     in the United States;
       Whereas public awareness, professional education, and 
     scientific research regarding hydrocephalus should increase 
     through partnerships between the Federal Government, health 
     care professionals, and patient advocacy groups, such as the 
     Pediatric Hydrocephalus Foundation;
       Whereas these public-private partnerships would ensure that 
     individuals suffering with hydrocephalus and their families 
     are empowered with educational materials, informed about the 
     latest research, have access to quality health care, and are 
     able to advocate for increased research and funding in order 
     advance the public's understanding of the condition, improve 
     the diagnosis and treatment of hydrocephalus, and one day, 
     find a cure; and
       Whereas September would be an appropriate month to 
     designate as ``National Hydrocephalus Awareness Month'': Now, 
     therefore, be it
       Resolved, That the House of Representatives supports the 
     designation of ``National Hydrocephalus Awareness Month''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Missouri (Mr. Clay) and the gentlewoman from Minnesota (Mrs. Bachmann) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Missouri.


                             General Leave

  Mr. CLAY. Mr. Speaker, I ask unanimous consent that all Members may 
have 5 legislative days in which to revise and extend their remarks.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Missouri?
  There was no objection.
  Mr. CLAY. I now yield myself as much time as I may consume.
  Mr. Speaker, I rise in strong support of House Resolution 373 which 
expresses the support of Congress for the designation of the month of 
September as National Hydrocephalus Awareness Month. It is important 
for us to recognize the severity of this neurological condition that is 
estimated to affect 1 million Americans. The resolution was introduced 
on April 28 by my colleague from Minnesota (Mrs. Bachmann) and has 
secured more than 80 cosponsors while meeting all requisite criteria 
for approval by the Committee on Oversight and Government Reform.
  Hydrocephalus is defined as ``excessive accumulation of cerebrospinal 
fluid in the brain.'' The National Institute of Neurological Disorders 
and Stroke estimates that 1 in every 500 children are afflicted with 
this condition. Additionally, hydrocephalus is the leading cause of 
brain surgery in children. Since 2005, the National Institutes of 
Health has increased its focus on improving hydrocephalus care, but 
more needs to be accomplished. The NIH currently provides less than $1 
million in annual funding for hydrocephalus research, but hopefully 
National Hydrocephalus Awareness Month can spur renewed efforts in this 
area of study.
  Mr. Speaker, during our efforts to overhaul the health care system, 
it is critical that we remember to support important public health 
initiatives like National Hydrocephalus Awareness Month. I urge my 
colleagues to support House Resolution 373.
  I reserve the balance of my time.
  Mrs. BACHMANN. Mr. Speaker, I yield myself as much time as I may 
consume.
  I rise today in support of House Resolution 373, which I authored in 
order to raise awareness of hydrocephalus, a devastating neurological 
disorder which often leaves individuals and their families in constant 
fear of sudden, irreversible damage or even death. Hydrocephalus, or 
water on the brain, as most people refer to it, is a medical condition 
that results in abnormal accumulation of cerebrospinal fluid, otherwise 
called CSF, in the ventricles or cavities of the brain. Sadly, the 
prognosis for individuals afflicted with hydrocephalus is difficult to 
predict and is often fatal. Moreover, while this condition affects 
approximately 1 in every 500 births, as my colleague Mr. Clay said, 
very few people are even aware of this devastating condition.
  The National Institute of Neurological Disorders and Stroke is 
currently conducting research related to hydrocephalus prevention and 
treatment. However, more must be done at the community level to educate 
individual Americans about this surprisingly prevalent disorder. 
Recognizing the month of September as National Hydrocephalus Awareness 
Month will bring this disease to the public's attention and, I believe, 
will encourage the discussions necessary to more effectively address 
the devastating effects of this disease and provide support to families 
who live with it every day.
  For example, currently the most common form of treatment for 
hydrocephalus involves the insertion of a shunt in order to maintain 
the flow of fluid from the brain. This outdated practice has been 
around now for almost 50 years and often results in complications that 
can jeopardize the life of the often very young child who is the 
patient. As one parent summarized for me, ``My son and all the other 
children who suffer from hydrocephalus are literally 12 to 15 hours 
away from irreversible damage, if not death, if a shunt failure was to 
go undetected or left untreated. This sometimes paralyzes parents, and 
there has got to be a better treatment out there, if not an

[[Page H8843]]

outright cure, we just have to find it.'' Mr. Speaker, I know you would 
agree we just have to find it.
  That being said, I would like to share the thoughts of a mother whose 
daughter Ally developed hydrocephalus at 1 year of age. She sent this 
letter to my office in hopes that sharing it with our great Nation will 
develop greater awareness of the disease among the general public. And 
with greater research, she's confident that it could be diagnosed more 
accurately and treated more efficiently. We certainly hope so. This is 
her letter, Mr. Speaker:
  ``My name is Michelle Janson. We have a 9-year-old daughter Ally who 
developed hydrocephalus at 1 year of age. The cause of her congenital 
hydrocephalus allowed her to be eligible for a fairly new procedure 
called a third ventriculostomy. Although there was a lot of information 
at the time about shunts, very little was known about the third 
ventriculostomy. After we researched our options and interviewed 
several neurosurgeons, Ally underwent a third ventriculostomy on July 
9, 2001.
  ``This year Ally has reached 8 years as one of the lucky few who have 
not encountered infections, revisions or malfunctions, as frequently 
seen with shunts. Although she does have other rare medical conditions 
to complicate things, she is leading a fairly normal childhood. She was 
the only one in her third grade class to be chosen to participate in 
the Young Authors Club and maintained straight A's throughout the 
school year, something many thought would be impossible.
  ``Several years ago we searched for a support group close to home 
that would provide our family with support and education about the 
condition. That's when we became involved with the Pediatric 
Hydrocephalus Foundation. The visions of those involved have encouraged 
us to actively participate in educating, providing support and to raise 
funds for local communities and families in need. The founders, Michael 
and Kim Illions, have also been active with government officials such 
as you to initiate a resolution known as H.R. 373 to declare September 
National Hydrocephalus Awareness Month.''
  Mr. Speaker, before I close, I want to echo the comments that 
Michelle Janson makes about the vision that Michael and Kim Illions 
have for children and families living with hydrocephalus. I have had 
the privilege of getting to know this lovely couple and their beautiful 
baby boy named Cole through my work on this resolution. They have such 
optimism and faith, it just permeates everything they do and say. It's 
hard not to feel more hopeful when you are with great people like the 
Illions, and that's the kind of support that they provide other 
families who live with hydrocephalus and the kind of support that we 
all hope will be spread by this resolution today. I want to urge all of 
our colleagues, Mr. Speaker, to start spreading this hope today by 
taking a moment to learn more about hydrocephalus by visiting the Web 
site hydrocephaluskids.org. It's the Web site for the Pediatric 
Hydrocephalus Foundation. Through increased awareness and education, we 
will take the steps that are needed to modernize the treatment of 
hydrocephalus and move toward a cure. I urge my colleagues to join 
myself and the 89 bipartisan cosponsors of House Resolution 373 in 
supporting the recognition of September as National Hydrocephalus 
Awareness Month.
  I reserve the balance of my time.
  Mr. CLAY. Mr. Speaker, I have no other speakers, and I will continue 
to reserve.
  Mrs. BACHMANN. Mr. Speaker, I yield as much time as he may consume to 
my distinguished colleague from the State of New Jersey, Mr. Leonard 
Lance.
  Mr. LANCE. Mr. Speaker, I rise in support of House Resolution 373 in 
an effort to raise awareness of the disease hydrocephalus. For too 
long, little attention has been paid to hydrocephalus. Together with 
Congressman Clay and Congresswoman Bachmann, I have put forth this 
resolution, recognizing September as National Hydrocephalus Awareness 
Month. I want to thank my distinguished colleagues in this regard.
  I also want to thank Michael Illions, his wife Kim and their brave 
son Cole for their steadfast advocacy on this issue. The Illions are 
constituents of mine in the Seventh Congressional District of New 
Jersey. Most of the best ideas in Washington come from our constituents 
back home. Michael, Kim and Cole Illions are together a shining example 
of this.
  Today's action by the House of Representatives will bring much-needed 
attention to hydrocephalus. It will encourage more research into its 
diagnosis and treatment. I am certain that with Federal support for 
additional research, we can develop a better treatment, if not a cure, 
for those suffering from hydrocephalus and help them lead healthier, 
fuller lives. I urge all of our colleagues to support House Resolution 
373. I want to thank Congresswoman Bachmann and Congressman Clay.
  Mr. CLAY. Mr. Speaker, I continue to reserve the balance of my time.
  Mrs. BACHMANN. Mr. Speaker, I urge all Members to support the passage 
of House Resolution 373.
  I yield back the balance of my time.
  Mr. CLAY. Mr. Speaker, again, I urge support for House Resolution 
373.
  I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Missouri (Mr. Clay) that the House suspend the rules and 
agree to the resolution, H. Res. 373.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds 
being in the affirmative, the ayes have it.
  Mrs. BACHMANN. Mr. Speaker, I object to the vote on the ground that a 
quorum is not present and make the point of order that a quorum is not 
present.
  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.
  The point of no quorum is considered withdrawn.

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