[Congressional Record Volume 154, Number 105 (Tuesday, June 24, 2008)]
[House]
[Pages H5940-H5942]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SENSE OF CONGRESS REGARDING DANDY-WALKER SYNDROME AND HYDROCEPHALUS
Ms. HOOLEY. Mr. Speaker, I move to suspend the rules and agree to the
concurrent resolution (H. Con. Res. 163) expressing the sense of
Congress in support of further research and activities to increase
public awareness, professional education, diagnosis, and treatment of
Dandy-Walker syndrome and hydrocephalus, as amended.
The Clerk read the title of the concurrent resolution.
The text of the concurrent resolution is as follows:
H. Con. Res. 163
Whereas Dandy-Walker syndrome is the most common congenital
malformation of the cerebellum and its causes are largely
unknown;
Whereas between 10,000 and 40,000 people have Dandy-Walker
syndrome in the United States;
Whereas the incidence of Dandy-Walker syndrome is at least
1 case per every 25,000 to 35,000 live births, however this
is likely a significant underestimate because of difficulties
diagnosing the syndrome;
Whereas the Metropolitan Atlanta Congenital Defects
Program, Centers for Disease Control and Prevention reports
that Dandy-Walker syndrome may affect as many as 1 in 5000
live born infants;
Whereas approximately 70 to 90 percent of patients with
Dandy-Walker syndrome have hydrocephalus;
Whereas Dandy-Walker syndrome accounts for approximately 1
to 4 percent of hydrocephalus cases;
Whereas patients with Dandy-Walker syndrome present with
developmental delay, enlarged head circumference, or signs
and symptoms of hydrocephalus;
Whereas Dandy-Walker syndrome affects males and females
approximately equally;
Whereas seizures occur in 15 to 30 percent of patients with
Dandy-Walker syndrome;
Whereas subnormal intelligence is manifested in 41 to 71
percent of patients with Dandy-Walker syndrome;
Whereas failure to diagnose Dandy-Walker syndrome with
hydrocephalus in a neonate or a child can cause serious
neurologic complications;
Whereas Dandy-Walker syndrome is named after former
University of New Mexico neurosurgeon and professor Arthur E.
Walker (1907-1995) and Walter E. Dandy (1883-1941), who first
described the disorder in 1914; and
Whereas there are 2 known researchers dedicated to Dandy-
Walker Syndrome in the United States and additional
investigators are needed: Now, therefore, be it
Resolved by the House of Representatives (the Senate
concurring), That--
(1) Congress commends the Director of the National
Institutes of Health for working with leading scientists and
researchers to organize the first National Institutes of
Health conference on hydrocephalus in September 2005 and the
Inaugural ``Cerebellar Development: Bench to Bedside
International Conference'' in November 2006; and
(2) it is the sense of Congress that--
(A) the Director of the National Institutes of Health
should continue the current collaboration, with respect to
Dandy-Walker syndrome, among the National Human Genome
Research Institute, the National Institute of Biomedical
Imaging and Bioengineering, the National Institute of Child
Health and Human Development, the National Institute of
Neurological Disorders and Stroke, and the Office of Rare
Diseases;
(B) further research into the epidemiology, diagnosis,
pathophysiology, disease burden, and improved treatment of
Dandy-Walker syndrome and hydrocephalus should be conducted
and supported; and
(C) public awareness and professional education regarding
Dandy-Walker research should increase through partnerships
between the Federal Government and patient advocacy
organizations, such as the Dandy-Walker Alliance and the
Hydrocephalus Association.
The SPEAKER pro tempore. Pursuant to the rule, the gentlewoman from
Oregon (Ms. Hooley) and the gentleman from Nebraska (Mr. Terry) each
will control 20 minutes.
The Chair recognizes the gentlewoman from Oregon.
General Leave
Ms. HOOLEY. Mr. Speaker, I ask unanimous consent that all Members
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
gentlewoman from Oregon?
There was no objection.
Ms. HOOLEY. Mr. Speaker, I yield myself as much time as I may
consume.
I rise in support of H. Con. Res. 163 which supports continued
research to increase public awareness, professional education,
diagnosis, and treatment of Dandy-Walker Syndrome and hydrocephalus.
Dandy-Walker Syndrome is a congenital brain malformation that affects
the cerebellum and the fluid spaces around it. Symptoms often develop
early in infancy robbing children of their future potential just as
their lives are beginning. Its causes are largely unknown, but what is
known is that it can have a devastating impact on a child. A baby with
Dandy-Walker Syndrome may experience developmental delays, enlarged
head size, and severely reduced intellectual capabilities.
Dandy-Walker Syndrome was discovered almost 100 years ago in 1914 by
former University of New Mexico neurosurgeon and professor Arthur E.
Walker and Dr. Walter E. Dandy. A cure for the disease remains elusive.
{time} 1445
The resolution before us supports the continuing research
collaboration into Dandy-Walker syndrome. It recognizes the work of the
National Institutes of Health with the National Human Genome Institute,
the National Institute
[[Page H5941]]
of Biomedical Imaging and Bioengineering, the National Institute of
Child Health and Human Development, the National Institute of
Neurological Disorders and Stroke, and the Office of Rare Diseases.
H. Con. Res. 163 also encourages increased collaboration between the
Federal Government and patient advocacy organizations seeking to find a
cure for Dandy-Walker syndrome.
I would like to thank my colleagues, Congresswoman Heather Wilson and
Congressman Chris Van Hollen, for their efforts in bringing this
resolution to the floor today. I urge my colleagues to join me in
support of H. Con. Res. 163.
I reserve the balance of my time.
Mr. TERRY. I yield myself as much time as I may consume.
Mr. Speaker, I, too, rise in favor of H. Con. Res. 163, which is
sponsored by the gentlewoman from New Mexico, Heather Wilson. She has
worked diligently on this issue and has helped raise public awareness
for the 10,000 to 40,000 approximate Americans currently diagnosed with
Dandy-Walker syndrome. I commend her on her work with H. Con. Res. 163
and support further research and activities to increase public
awareness, professional education, diagnosis, and treatment of Dandy-
Walker syndrome and hydrocephalus.
Currently, the National Institute of Neurological Disorders and
Stroke at the NIH conducts and supports a wide range of studies that
explore the complex mechanisms of normal brain development. The
knowledge gained from these fundamental studies provides the foundation
for understanding abnormal brain development and offers hope for new
ways to treat and prevent developmental brain disorders such as Dandy-
Walker syndrome.
Dandy-Walker syndrome is a congenital brain malformation that can
appear dramatically or develop unnoticed. Symptoms, which often occur
in early infancy, include slow motor development and progressive
enlargement of the skull. In older children, symptoms of increased
intracranial pressure such as irritability, vomiting, and convulsions,
and signs of cerebellar dysfunction such as unsteadiness, lack of
muscle coordination, or jerky movements of the eyes may occur. Other
symptoms include increased head circumference, bulging at the back of
the skull, problems with the nerves that control the eyes, face and
neck, and abnormal breathing patterns. Dandy-Walker syndrome is
frequently associated with disorders of other areas of the central
nervous system, and subnormal intelligence is manifested in 41 to 71
percent of the patients.
Treatment for the one in every 25,000 to 35,000 individuals diagnosed
with Dandy-Walker syndrome generally consists of treating the
associated problems with a special tube to drain off excess fluid
inside the skull. This will reduce intracranial pressure and help
control the swelling.
Mr. Speaker, I urge Members to recognize the outstanding research
that the NIH has conducted and commend them on their efforts to gain
more insight into brain disorders such as Dandy-Walker syndrome and
hydrocephalus. I, again, congratulate the gentlelady from New Mexico,
Heather Wilson, and the gentleman from Maryland in their interests in
helping these folks and bringing this resolution to the floor today.
I reserve the balance of our time.
Ms. HOOLEY. Mr. Speaker, I'm pleased to yield 4 minutes to the
gentleman from Maryland, Chris Van Hollen. I know he has worked very
hard on this issue.
Mr. VAN HOLLEN. I thank my colleague.
Mr. Speaker, I rise in strong support of this resolution, which
supports further research and also activities to increase public
awareness, professional education, diagnosis, and treatment of Dandy-
Walker syndrome and hydrocephalus.
I, too, want to thank our colleague from New Mexico, Heather Wilson,
for her leadership on this issue, her persistence on this issue. She
has met with families from around the country who are struggling with
Dandy-Walker syndrome, and I thank her for all the good work that she
has done on this matter.
As we've heard, this is a very rare birth defect that's commonly
associated with hydrocephalus. It can cause neurological damage that
will delay development and cause severe developmental problems and
sometimes lead to death. The Centers For Disease Control and Prevention
reports that the Dandy-Walker syndrome may affect one in 5,000 infants,
of which approximately 70 to 90 percent will go on to develop
hydrocephalus.
The causes of this disease are largely unknown, and current treatment
for Dandy-Walker consists primarily of treating the associated
problems, the symptoms, rather than the syndrome itself. And as we
heard, hydrocephalus is treated today much in the same way it was back
in 1952, when this syndrome was first identified, by inserting a
special tube called a ``shunt'' into the brain to drain off excess
fluid.
We're here today because we think we need to focus more efforts and
research in this area, that we shouldn't allow 1950s medical treatment
to dictate how Dandy-Walker syndrome and hydrocephalus are treated.
That is why we need to learn more about this syndrome and continue to
raise public awareness about this condition. And that's why the
National Institutes of Health should continue the current collaboration
and research that they are doing and increase that effort.
I've had the privilege of getting to know a family with a child who
has Dandy-Walker syndrome and hydrocephalus. While waiting for the
birth of their child in 2005, Andrea and Eric Cole of Kensington,
Maryland, learned that their son would be born with Dandy-Walker
syndrome. Their son, Ryan, was born 3 months prematurely. He weighed 1
pound, 15 ounces.
On learning that there was no national organization or support
network already organized to advocate on behalf of individuals with
Dandy-Walker syndrome, Eric and Andrea took the necessary steps to
found the only national nonprofit organization for Dandy-Walker
syndrome, the Dandy-Walker Alliance. We're very proud that they are
with us today.
The Dandy-Walker Alliance is an organization that's launched a
variety of educational programs, publications, activities, and other
efforts to raise public awareness and understanding of the Dandy-Walker
syndrome.
Mr. Speaker, what we're trying to do today is send a message to
families across the country who have members of their family who have
Dandy-Walker syndrome, to let them know that they are not alone in this
fight, that Congress is listening to their concerns, and that Congress
is taking action to encourage all the resources that we can bring to
bear through the NIH and other organizations to help fight this
syndrome, and to make sure that those around the country who have not
been heard until recently really have a voice, not just here on the
floor of the Congress, but through the resources that we can focus on
this very important issue.
So I urge my colleagues to join me in passing this resolution. Again,
I congratulate our colleague from New Mexico, Heather Wilson, for her
leadership.
Mr. TERRY. At this time, I yield as much time as she may consume to
the author, the gentlelady from New Mexico.
Mrs. WILSON of New Mexico. I thank my colleague from Nebraska.
I also wanted to thank my colleague from Maryland, Chris Van Hollen,
for joining me in this effort and being the lead cosponsor of House
Concurrent Resolution 163. There are 105 Members of this body who are
cosponsors of this resolution, and it's intended to increase awareness
of a syndrome that, frankly, before someone came and talked to me about
it, I had never heard of. My guess is most of our colleagues have never
heard of Dandy-Walker syndrome because it affects a relatively small
number of families, but it's a very serious syndrome that deserves
attention and research and understanding.
The resolution encourages the National Institutes of Health and the
Centers for Disease Control to do more research on the causes and cures
and prevalence of the disease and to encourage education of medical
doctors so that it can be quickly and accurately diagnosed.
Even the estimates of the number of children who suffer from Dandy-
Walker vary greatly. Somewhere between 10,000 and 40,000 children in
America
[[Page H5942]]
suffer from this syndrome, and it is very serious and often very
difficult to diagnose, a combination of developmental delays, enlarged
head circumference, hydrocephalus and seizures, that together define a
syndrome that was initially described by a neurosurgeon and professor
at the University of New Mexico named Dr. Arthur Walker. He initially
described nine cases of what is now known as Dandy-Walker in 1942.
Early detection and diagnosis, accurate diagnosis, is critical for
these children, particularly because of the coincidence of
hydrocephalus in children, a very serious condition that can result in
neurological complications if it's not diagnosed very early in life.
Currently, there are only five researchers in the United States who
are focused on Dandy-Walker and trying to understand it, develop
treatments, and perhaps eventually develop ways to prevent the disease.
This resolution expresses the sense of the Congress that further
research and activities are needed to increase public awareness, to
increase professional education, and to make sure physicians and the
medical community are aware of what this syndrome's characteristics are
so that it can be accurately diagnosed.
It also commends the National Institutes of Health on their first-
ever sponsorship of a research workshop focused on hydrocephalus and
Dandy-Walker, and acknowledges the need for continued collaboration
between different institutes and centers at NIH.
Some of my colleagues have commended me for my leadership on this
issue, and I have to demur in that regard. Sometimes I think that the
best thing about being a Representative is that you are often the wagon
that harnesses the enthusiasm and the passion of others. I would like
to recognize where that passion really comes from: Eric Cole and his
wife Andrea, who are here in the gallery today. They are the proud
parents of Ryan.
The fact is that Eric's dad called me. Eric's dad and I served in the
Air Force together, and one time, Captain Don Cole tried to teach me
something about politics at the United States Air Force Academy. There
are people in this body who would probably disagree as to how well I
learned those lessons. But Captain Cole's son is Eric Cole. His
grandson is Ryan, and Ryan suffers from Dandy-Walker syndrome.
I want to commend Eric for his leadership, for making a decision to
get involved, not only to help his son but to help others who suffer
from the same disease. It is because individuals choose to get involved
that things change over time.
I would like to place into the Record a letter of support from the
March of Dimes in support of this resolution. It's dated June 22, 2007.
Again, I'd like to thank my colleague, Mr. Van Hollen of Maryland,
for working with us on this resolution and for his staff member, Ray
Thorn, who's been particularly helpful in this process. Also, I would
like to recognize two of my colleagues, Mr. Aderholt of Alabama and Mr.
Ryan of Ohio, for their support and their encouragement on this
resolution.
I would urge my colleagues to support this resolution to move forward
on the understanding and the research and the professional education
associated with a syndrome that adversely affects close to 40,000 young
Americans.
March of Dimes,
Washington, DC, June 22, 2007.
Hon. Heather Wilson,
House of Representatives,
Washington, DC.
Dear Representative Wilson: On behalf of more than 3
million volunteers and 1400 staff members of the March of
Dimes Foundation, I am writing to commend you for introducing
H. Con. Res. 163, expressing the sense of Congress in support
of further research and activities to increase public
awareness, professional education, diagnosis and treatment of
Dandy-Walker syndrome and hydrocephalus.
As you may know, in the United States, about 3% of all
babies are born with a major birth defect. Birth defects are
the leading cause of infant mortality accounting for more
than 20% of all infant deaths. Children with birth defects
who survive often experience lifelong physical and mental
disabilities, and are at increased risk for developing other
health problems. In fact, birth defects contribute
substantially to the nation's health care costs. According to
Centers for Disease Control and Prevention (CDC), the
lifetime economic cost of caring for infants born each year
with 1 of the 18 most common birth defects exceeds $8
billion.
Yet, the causes of nearly 70% of birth defects are unknown.
Therefore, March of Dimes is working with Members of Congress
from both sides of the aisle to increase funding for the
National Center on Birth Defects and Developmental
Disabilities, with particular focus on the groundbreaking
research being done through the National Birth Defects
Prevention Study. This important CDC initiative is being
carried out by 9 regional Centers for Birth Defects Research
and Prevention. The Centers use medical histories, DNA
samples and data on environmental exposures, and lifestyle
obtained from parents to study gene-environment interactions.
The study has already yielded critical information on certain
birth defects and has been particularly useful in responding
to public health concerns regarding possible links between
medication exposures and birth defects. The study also holds
promise for increasing our understanding of the effects of
medication use during pregnancy.
Increased federal support for birth defects research and
prevention is sorely needed and H. Con. Res. 163 will
heighten awareness and encourage additional federal research
on Dandy-Walker syndrome and other serious birth defects.
Thank you for your leadership to help improve the health of
infants and know that all of us at the March of Dimes look
forward to working with you on this and other initiatives to
improve the health of each and every child.
Sincerely,
Marina L. Weiss,
Senior Vice President,
Public Policy & Government Affairs.
Ms. HOOLEY. We have no other speakers, if you would like to close.
I'm happy to do that after you.
Mr. TERRY. Mr. Speaker, I want to close by thanking the gentlelady
from New Mexico and the gentleman from Maryland (Mr. Van Hollen) for
bringing this to the floor, helping to increase public awareness and
provide education and training to physicians for early diagnosis, and
encouraging the NIH to continue their research to help those with
Dandy-Walker and hydrocephalus.
With that, I would encourage all of our colleagues today to vote
``aye'' in support of this measure.
I yield back my time.
{time} 1500
Ms. HOOLEY. Mr. Speaker, again I urge an ``aye'' vote.
This bill will give families with Dandy-Walker Syndrome hope. It is
something we can all come together on. People need to know that we
listen when they speak. And this is a way to make sure that further
research is done on a disease that's been around for a long time. Most
of us didn't know about it before this bill.
Mr. Speaker, I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentlewoman from Oregon (Ms. Hooley) that the House suspend the rules
and agree to the resolution, H. Con. Res. 163, 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. TERRY. 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.
____________________