[United States Statutes at Large, Volume 122, 110th Congress, 2nd Session]
[From the U.S. Government Publishing Office, www.gpo.gov]

 
[NOTE: Sept. 22, 2008 -  [H.Con.Res.163]   DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH--COMMENDATION

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;


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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.

Agreed to September 22, 2008.