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[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H. Con. Res. 163 Enrolled Bill (ENR)]

        H.Con.Res.163
                                            Agreed to September 22, 2008

                       One Hundred Tenth Congress

                                 of the

                        United States of America

                          AT THE SECOND SESSION

          Begun and held at the City of Washington on Thursday,
            the third day of January, two thousand and eight

                          Concurrent Resolution

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.
Attest:

                                 Clerk of the House of Representatives.

Attest:

                                               Secretary of the Senate.
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