[Congressional Record Volume 153, Number 176 (Wednesday, November 14, 2007)]
[Extensions of Remarks]
[Pages E2412-E2413]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                DANDY-WALKER SYNDROME AND HYDROCEPHALUS

                                 ______
                                 

                         HON. CHRIS VAN HOLLEN

                              of maryland

                    in the house of representatives

                      Wednesday, November 14, 2007

  Mr. VAN HOLLEN. Madam Speaker, I rise in support of H. Con. Res. 163, 
expressing the sense of the Congress in support of further research and 
activities to increase public awareness, professional education, 
diagnosis, and treatment of Dandy-Walker Syndrome and hydrocephalus.
  In 2005 while awaiting the birth of their first child Ryan, Andrea 
and Eric Cole of Kensington, Maryland learned that he would be born 
with a rare birth defect called Dandy-Walker Syndrome and a condition 
called hydrocephalus. Ryan was born on May 3, 2005, 3 months premature 
and weighing 1 pound 15 ounces, at George Washington University 
Hospital in Washington, D.C. He would spend a total of 156 days in the 
hospital during his first year of life.
  Today, the Cole family leads the fight against Dandy-Walker Syndrome 
and is the inspiration behind my efforts against this terrible birth 
defect. On learning that no national organization existed to advocate 
on behalf of individuals with Dandy-Walker Syndrome, Eric and Andrea 
took the necessary steps to found the only national non-profit 
organization for Dandy-Walker Syndrome, and located it in Maryland's 
Eighth Congressional District, which I represent. Today, the Dandy-
Walker Alliance remains the only non-profit organization committed to 
educational and informational activities, programs and publications and 
supporting non-partisan research and events to increase public 
awareness of Dandy-Walker Syndrome. The Dandy-Walker Alliance supports 
all efforts to determine the cause(s) of, to find the cure for and to 
ameliorate the effects of Dandy-Walker Syndrome.
  Dandy-Walker Syndrome is a congenital malformation of the cerebellum 
that can cause developmental delay, is frequently associated with 
hydrocephalus that can lead to an enlarged head circumference, and can 
cause neurological damage possibly leading to death. The Centers for 
Disease Control and Prevention reports that Dandy-Walker Syndrome may 
affect as many as 1 in 5,000 live born infants of which approximately 
70 to 90 percent will develop hydrocephalus. Treatment for individuals 
with Dandy-Walker generally consists of treating the associated 
problems rather than the syndrome itself. Hydrocephalus is treated 
today the same way that it was in 1952, by inserting a shunt into the 
brain to drain off excess fluid.
  In addition to what the Coles are doing with the Dandy-Walker 
Alliance, a filmmaker from Colorado with a nephew affected by Dandy-
Walker is completing the first-ever documentary on Dandy-Walker 
Syndrome called ``Dandy Kids,'' which will premiere in January 2008. A 
couple in Florida was also inspired to film a commercial with their 
three-year-old son affected by Dandy-Walker and hydrocephalus to help 
promote the need for blood donations since the brain surgeries to treat 
his hydrocephalus often require transfusions.
  Dandy-Walker Syndrome involves many complex issues. That is why 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.

  Further research into the epidemiology, diagnosis, pathophysiology, 
disease burden, and improved treatment of Dandy-Walker Syndrome should 
be conducted and supported. The National Institutes of Health should 
take the lead in sponsoring an annual workshop to increase awareness 
and set national research priorities for Dandy-Walker Syndrome and 
hydrocephalus.
  The Centers for Disease Control and Prevention should also form a 
coordinating committee for Dandy-Walker Syndrome and hydrocephalus 
research, which would annually report to the public its findings on the 
progress in the epidemiology, pathophysiology, disease burden, 
treatment improvements, diagnoses, and awareness for Dandy-Walker 
Syndrome and hydrocephalus.
  Finally, public awareness and professional education regarding Dandy-
Walker research

[[Page E2413]]

should increase through partnerships between the Federal Government and 
patient advocacy organizations, such as the Dandy-Walker Alliance and 
the Hydrocephalus Association.
  Madam Speaker, let's tell families like the Coles that they are not 
alone in their fight against Dandy-Walker Syndrome. Certainly we can 
lend a hand in helping to further raise awareness of Dandy-Walker 
Syndrome and to act on behalf of disabled members in society who cannot 
advocate for themselves. I think we all agree that partnerships between 
the Federal Government and advocacy groups are important to the 
American people. That is why I urge my colleagues from both parties to 
join me in co-sponsoring House Concurrent Resolution 163 to raise 
awareness for Dandy-Walker Syndrome and hydrocephalus.

                          ____________________