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Dandy
Kids Documentary
Dandy Kids is a documentary about families who share their
life experiences of looking for answers from a limited
number within the medical community. Over and over again
families struggle to find answers for a diagnosis for which
the cause and treatment are not known. Many are told
pregnancies should be terminated, and that the prognosis is
hopeless. Dandy Kids will depict the experts, advocates, and
ultimately the Heroes who by way of faith, perseverance, and
unconditional love live life to the fullest every day! Many
times this is done minute by minute, second by second, and
in the research labs chromosome by chromosome. This
documentary is being made in conjunction with Congress,
Researchers and those families effected by the various types
of Dandy Walker malformations, to promote research and raise
awareness, and give HOPE! |
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One boy's Aunt
connects with families around the world in search of of what it
means to live with the many faces of Dandy Walker Syndrome, and how
she can help those receiving a diagnosis to look for answers. |
Dandy-Walker malformation research project
The Brain Malformation Research Project located at The University of
Chicago has recently begun molecular genetic studies of Dandy-Walker
malformation (DWM) and related birth defects of the brainstem and
cerebellum (the lower portion of the brain), directed by Drs.
William B. Dobyns and Kathleen J. Millen. From these studies, we
hope to (1) delineate several different subtypes of DWM and related
birth defects based initially on differences in associated
abnormalities, (2) identify the key factors associated with
different outcome, and (3) identify the genes that contribute to
these anomalies. We have already begun testing of several genes.
We are interested in studying individuals (and their families) with
all forms of DWM and related birth defects of the brainstem and
cerebellum including typical DWM, the “Dandy-Walker variant”, DWM
associated with other birth defects, hypoplasia of the cerebellum
without other anomalies, the molar tooth malformation or “sign”
associated with Joubert syndrome, and others.
If you (and your family) are interested in participating, please
contact us by phone in the Project Office, or by email to our
Project Coordinator (details below). We can then explain the project
in more detail, and send you our project Information Form and
Consent Form to participate.
William B. Dobyns M.D
Seattle Children's Research Institute Center for Integrative Brain
research
1900 Ninth Ave.
m/s c95-10 Room 1026
Seattle WA 98101
Kathleen J. Millen Ph D.
Seattle Children's Research Institute Center for Integrative Brain
Research
1900 Ninth Avenue
M/S C9S-10, Room 1026
Seattle, WA 98101
Office: 206-884-3225
Fax: 206-884-1210
Assistant: GarMin Chan
206-884-1025 |
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Seattle Children's Research Institute Center for
Integrative Brain Research |
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