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.

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

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.

Madam Speaker, I rise in support of H. Con. Res. 163, expressing the sense of the Congress in support of further research and activities to increase public awareness, professional education, diagnosis, and treatment of Dandy-Walker Syndrome and hydrocephalus.

In 2005 while awaiting the birth of their first child Ryan, Andrea and Eric Cole of Kensington, Maryland learned that he would be born with a rare birth defect called Dandy-Walker Syndrome and a condition called hydrocephalus. Ryan was born on May 3, 2005, 3 months premature and weighing 1 pound 15 ounces, at George Washington University Hospital in Washington, D.C. He would spend a total of 156 days in the hospital during his first year of life.

Today, the Cole family leads the fight against Dandy-Walker Syndrome and is the inspiration behind my efforts against this terrible birth defect. On learning that no national organization existed to advocate on behalf of individuals with Dandy-Walker Syndrome, Eric and Andrea took the necessary steps to found the only national non-profit organization for Dandy-Walker Syndrome, and located it in Maryland's Eighth Congressional District, which I represent. Today, the Dandy- Walker Alliance remains the only non-profit organization committed to educational and informational activities, programs and publications and supporting non-partisan research and events to increase public awareness of Dandy-Walker Syndrome. The Dandy-Walker Alliance supports all efforts to determine the cause(s) of, to find the cure for and to ameliorate the effects of Dandy-Walker Syndrome.

Dandy-Walker Syndrome is a congenital malformation of the cerebellum that can cause developmental delay, is frequently associated with hydrocephalus that can lead to an enlarged head circumference, and can cause neurological damage possibly leading to death. The Centers for Disease Control and Prevention reports that Dandy-Walker Syndrome may affect as many as 1 in 5,000 live born infants of which approximately 70 to 90 percent will develop hydrocephalus. Treatment for individuals with Dandy-Walker generally consists of treating the associated problems rather than the syndrome itself. Hydrocephalus is treated today the same way that it was in 1952, by inserting a shunt into the brain to drain off excess fluid.

In addition to what the Coles are doing with the Dandy-Walker Alliance, a filmmaker from Colorado with a nephew affected by Dandy- Walker is completing the first-ever documentary on Dandy-Walker Syndrome called ``Dandy Kids,'' which will premiere in January 2008. A couple in Florida was also inspired to film a commercial with their three-year-old son affected by Dandy-Walker and hydrocephalus to help promote the need for blood donations since the brain surgeries to treat his hydrocephalus often require transfusions.

Dandy-Walker Syndrome involves many complex issues. That is why 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.

Further research into the epidemiology, diagnosis, pathophysiology, disease burden, and improved treatment of Dandy-Walker Syndrome should be conducted and supported. The National Institutes of Health should take the lead in sponsoring an annual workshop to increase awareness and set national research priorities for Dandy-Walker Syndrome and hydrocephalus.

The Centers for Disease Control and Prevention should also form a coordinating committee for Dandy-Walker Syndrome and hydrocephalus research, which would annually report to the public its findings on the progress in the epidemiology, pathophysiology, disease burden, treatment improvements, diagnoses, and awareness for Dandy-Walker Syndrome and hydrocephalus.

Finally, 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.

Madam Speaker, let's tell families like the Coles that they are not alone in their fight against Dandy-Walker Syndrome. Certainly we can lend a hand in helping to further raise awareness of Dandy-Walker Syndrome and to act on behalf of disabled members in society who cannot advocate for themselves. I think we all agree that partnerships between the Federal Government and advocacy groups are important to the American people. That is why I urge my colleagues from both parties to join me in co-sponsoring House Concurrent Resolution 163 to raise awareness for Dandy-Walker Syndrome and hydrocephalus.

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.

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.

At this time, I yield as much time as she may consume to the author, the gentlelady from New Mexico.

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.

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.

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.

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.

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.

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

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. 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.

We have no other speakers, if you would like to close. I'm happy to do that after you.

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.