Dandy-Walker month debated in assembly

Wednesday, March 12, 2008

Dandy-Walker month debated in assembly

Kensington nonprofit at heart of bill to raise awareness of brain condition

by Patrick Dunne | Staff Writer

E-mail this article \ Print this article

State lawmakers are discussing a bill that would lead to a proclamation to name May as ‘‘Dandy–Walker Syndrome and Hydrocephalus Awareness Month” to raise awareness of the rare brain disorder.

Dandy-Walker Syndrome is a congenital brain malformation, frequently associated with hydrocephalus, a condition that limits the flow of fluid around the brain and to the spinal cord, which is necessary for motor skills and the nervous system. Symptoms, which often occur in early infancy, include slow motor development and enlargement of the skull because of the building fluid.

Founders of the Kensington-based Dandy-Walker Alliance, Inc., testified before the Education, Health and Environmental Affairs Committee on Feb. 29 on a bill submitted by Sen. Richard S. Madaleno Jr. (D-Dist 18) of Kensington.

‘‘It seemed like everyone on the committee was receptive to what we’re trying to do,” said Eric Cole, who co-founded the alliance. ‘‘It really clicked with them that through the whole raising of awareness...it will spur some scientific interest. The squeaky wheel gets the oil.”

Cole and his wife, Andrea, of Kensington founded the Dandy-Walker Alliance, Inc., a nonprofit dedicated to raising awareness and funds for research of Dandy-Walker syndrome. The Coles’ 2-year-old son, Ryan, was born with the condition.

Cole and others also endorsed a similar house bill on Feb. 20 sponsored by state Dels. Justin D. Ross (D-Dist. 22) of Greenbelt and Dist. 18 Dels. Alfred C. Carr Jr. of Kensington, Ana Sol Gutierrez of Chevy Chase and Jeff Waldsteicher of Kensington.

The house bill is currently being discussed in the Health and Government Operations Committee, and a final vote on the bills could be called before the legislative session ends on April 7.

The Coles approached state and federal lawmakers before their son was born to find state agencies and programs to help them raise Ryan. Their Web site, www.dandy-walker.org, offers information about assistance programs and research from the National Institutes of Health.

Alliance members are planning poster contests, public service announcements and the official launch of a campaign for corporations if the awareness month is passed in the General Assembly.

‘‘Every Marylander has a part to play in raising awareness and no part is too small,” Cole said in his testimony on Feb. 29. ‘‘It can not be overstated how much this awareness month will help.”