Dandy-Walker Advocacy
in Maryland




Linda, Brian, George, Kia, Darrin and Eric after delivering testimony before the Maryland Senate on Feb. 29, 2008.


  Hearing audio on MP3 (30 minutes)
  Maryland Senate Public Hearing (George)   Maryland Senate Public Hearing (Brian)
  Maryland Senate Public Hearing (Eric)
  Support from Leonardtown Middle School   Maryland Senate Bill 477





Maryland Delegate Justin Ross, Andrea and Eric on Feb. 20, 2008.



  Maryland House Public Hearing
  Maryland House Bill 895

Dandy-Walker Leadership
on Capitol Hill




U.S. Congressman Chris Van Hollen (MD), Ryan, Andrea and Eric in July 2006.


  Congressman Van Hollen Floor Speech





U.S. Congressman David Obey (WI), Ryan, Andrea and Eric in March 2007.

  Congressman Obey Public Hearing




U.S. Congresswoman Heather Wilson (NM), Ryan and Eric in May 2007.

  Congresswoman Wilson Public Statement

House Congressional Resolution 163
Ninety-two cosponsors and counting!


What can I do?

Read the Dandy-Walker Resolution
View the Dear Colleague Letter
Use this script to call and ask your member of Congress to cosponsor House Congressional Resolution 163 on Dandy-Walker Syndrome

A copy of the current financial statement of the Dandy-Walker Alliance, Inc. is available by writing 4422 Clearbrook Lane Kensington, MD 20895 or by calling (301) 919-2653. Documents and information submitted under the Maryland Solicitations Act are also available, for the cost of postage and copies, from the Maryland Secretary of State, State House, Annapolis MD 21401, (410) 974-5534.






What's New in the Dandy-Walker World?
Arrow Maryland Governor proclaims May 2008 Dandy-Walker Syndrome and Hydrocephalus Awareness Month.

Silver Ribbon Coalition Campaign for the Brain. Visit the Silver Ribbon Coalition!

Non-English Dandy-Walker Alliance site DWA websites are now available in Chinese, Greek, Indonesian, Korean, Russian, Serbian, Spanish and Ukranian.

Arrow Do you know a language other than English? Help others worldwide by translating a one page Dandy-Walker fact sheet and e-mail it in.



What is Dandy-Walker?

A congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present. The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres), and malformations of the heart, face, limbs, fingers and toes.


What is the Dandy-Walker Alliance?

The Dandy-Walker Alliance, Inc. is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3). In giving to the Dandy-Walker Alliance, you help us continue our commitment to providing educational and informational activities, programs and publications and supporting non-partisan research and events to increase public awareness for Dandy-Walker Syndrome. We support all efforts to determine the cause(s) of, find the cure for and to ameliorate the effects of Dandy-Walker Syndrome. Donations directly to the Dandy-Walker Alliance are tax deductible to the extent permitted by law. Please consult your tax advisor for more information concerning the tax treatment of donations to the Dandy-Walker Alliance. Read more


Alabama-born songstress and Nashville recording artist
Laura Dodd
performed the title track "Songbird" from her most recent album on April 3, 2008 for members of Congress in the U.S. Capitol to raise awareness for Dandy-Walker Syndrome. The title track was used in the documentary "Dandy Kids". To learn more about Laura, her connection to Dandy-Walker and to watch her perform live visit: www.lauradodd.com








Your Dandy-Walker News

Answered prayers in Salisbury, NB (pg 2)
Political advocacy in Leonardtown, MD
Courage in Killeen, TX
DW month debated in Annapolis, MD
New beginnings in Kensington, MD
Dandy Kids in Denver, CO


Contribute today with our secure online credit card donation form


National Institutes of Health research literature

(click logo)

Florida's Blood Centers teamed up with the Blackwell family and Orlando's WFTV Channel 9 to create a promotional commercial that educates the community about maintaining a safe and adequate blood supply and also raise awareness for Dandy-Walker Syndrome.

If you have information that you would like to have considered for inclusion on this site please e-mail it to us at submission@dandy-walker.org.



For instance, Mr. Tyrell Arnold authored an Essay on Dandy-Walker Syndrome, complete with full citations for public use.

Note: This material is for informational purposes only and does not constitute medical advice. The opinions expressed in this paper are those of the author's and not necessarily those of the Dandy-Walker Alliance.