Sense of Congress Regarding Dandy-Walker Syndrome and Hydrocephalus

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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.

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