[Congressional Record (Bound Edition), Volume 154 (2008), Part 10]
[House]
[Pages 13493-13495]
[From the U.S. 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 13494]]

 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

[[Page 13495]]

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 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.

                          ____________________