IV 
110TH CONGRESS 
1ST SESSION 
H. CON. RES. 163 
Expressing the sense of Congress in support of further research and activities 
to increase public awareness, professional education, diagnosis, and treat-
ment of Dandy-Walker syndrome and hydrocephalus. 
IN THE HOUSE OF REPRESENTATIVES 
MAY 24, 2007 
Mrs. WILSON of New Mexico (for herself, Mr. VAN HOLLEN, Mr. ADERHOLT, 
Mr. BONNER, Mr. BACHUS, and Mr. RYAN of Ohio) submitted the fol-
lowing concurrent resolution; which was referred to the Committee on 
Energy and Commerce 
CONCURRENT RESOLUTION 
Expressing the sense of Congress in support of further re-
search and activities to increase public awareness, profes-
sional education, diagnosis, and treatment of Dandy- 
Walker syndrome and hydrocephalus. 
Whereas Dandy-Walker syndrome is the most common con-
genital 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 dif-
ficulties diagnosing the syndrome; 
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•HCON 163 IH 
Whereas the Metropolitan Atlanta Congenital Defects Pro-
gram, Centers for Disease Control and Prevention re-
ports 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 Uni-
versity of New Mexico neurosurgeon and professor Ar-
thur 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 in-
vestigators are needed: Now, therefore, be it 
Resolved by the House of Representatives (the Senate 
concurring), That— 
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•HCON 163 IH 
(1) Congress commends the Director of the Na-
tional Institutes of Health for working with leading 
scientists and researchers to organize the first Na-
tional Institutes of Health conference on hydro-
cephalus in September 2005 and the Inaugural 
‘‘Cerebellar Development: Bench to Bedside Inter-
national 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 collabora-
tion, with respect to Dandy-Walker syndrome, 
among the National Human Genome Research 
Institute, the National Institute of Biomedical 
Imaging and Bioengineering, the National In-
stitute of Child Health and Human Develop-
ment, 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 
should be conducted and supported; 
(C) the National Institutes of Health 
should take the lead in sponsoring an annual 
workshop to increase awareness and set na-
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•HCON 163 IH 
tional research priorities for Dandy-Walker syn-
drome and hydrocephalus; 
(D) the Centers for Disease Control and 
Prevention should form a coordinating com-
mittee for Dandy-Walker syndrome and hydro-
cephalus research, which would annually report 
to the public its findings on the progress in the 
epidemiology, pathophysiology, disease burden, 
treatment improvements, diagnoses, and aware-
ness for Dandy-Walker syndrome and hydro-
cephalus; and 
(E) public awareness and professional edu-
cation regarding Dandy-Walker research should 
increase through partnerships between the Fed-
eral Government and patient advocacy organi-
zations, such as the Dandy-Walker Alliance and 
the Hydrocephalus Association. 
Æ 
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