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 DandyWalker syndrome may affect as many as 1 in 5000 live born 

infants; 

Whereas approximately 70 to 90 percent of patients with DandyWalker 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 DandyWalker 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 
H. Con. Res. 163—2 

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.