Background - Updated February 2007
CDO was founded in 1992 by a group of seven parents raising children born with rare
chromosome disorders. The Alliance of Genetic Support Groups (now the Genetic Alliance)
helped CDO get its start that year, and CDO was approved as a member of the National
Organization of Rare Disorders (NORD) in 1998.
Our mission: to provide support to parents
of children born with rare chromosome disorders, gather together and share information,
and to promote research and a positive community understanding of these disorders.
CDO envisions a time in the not too distant future when doctors will have a great
deal of information available on each and every chromosome disorder. They will be
able to tell parents symptoms associated with a particular deletion, duplication
or other disorder as well as what not to worry about. It is also our hope that appropriate
therapies or other treatments will be recommended specific to particular disorders
and that affected individuals will have a much greater chance of a fuller life.
This is already beginning to happen and it is CDO’s goal to further support
this research in any way possible.
With an extensive library of available up-to-date articles, detailed registry, newsletters,
research opportunities, interaction with our medical advisory board, and a listserv
that’s online 24 hours a day, CDO is able to provide support and information
to families around the world.
Affiliations
CDO is affiliated with the following organizations:
Professional Advisory Board
CDO thanks the very skilled professionals on our medical advisory board. By donating
their time to help all our families, their support and assistance is invaluable.
- Sally Daugherty Attorney at Law Salmon, Ricchezza, Singer & Turchi, LLP,
Philadephia PA
- Katharine Elizabeth Donaldson Grief Counselor Perinatal Clinical Nurse Specialist
Capital Health System, Trenton, NJ
- Mary Haag, Ph.D. Director, Genetics Laboratory Shodair Hospital Helena,
MT
- Karen Heller Certified Genetic Counselor UT Southwestern Medical Center,
Dallas TX
- Dr. Shashikant Kulkarni Director, Clinical & Molecular Cytogenetics, Laboratory
& Genomic Medicine, Pathology, Washington University School of Medicine, St Louis,
MO
- W. Lurie, M.D. Ph.D. Consultant, National Human Genome Institute National
Institutes of Health Bethesda, MD
- Thomas Morgan M.D. Medical Geneticist St. Louis Children's Hospital
- Alexis Feldman Poss Certified Genetic Counselor, Duke University Medical Center, Durham, NC
- Myra Irene Roche Certified Genetic Counselor Associate Professor in Pediatrics,
Dept. of Pediatrics, UNC-CH.
- Lisa Struss, M.A., CCC-SLP Speech Language Pathologist
- Samango Sprouse, Ed.D. Director Neurodevelopmental Center for Young Children
Assistant Clinical Professor - Dept of Pediatrics George Washington University Washington,
DC
- Wallerstein, M.S. Pediatric/Prenatal Genetic Counselor Hackensack University
Medical Center, Hackensack, NJ
- Robert Wallerstein, M.D. Genetics Service Hackensack University Medical
Center Hackensack, NJ
- Christopher A. Walsh, M.D., Ph.D. Bullard Professor of Neurology Harvard
Medical School Boston, MA
- Andrew R. Zinn, M.D., Ph.D. Associate Professor of Internal Medicine University
Texas Southwestern Medical School
Meet your CDO board members and some of the volunteers
CDO is managed primarily by volunteer parents of children with rare chromosome disorders.
CDO is directed by a four member, elected board serving two-year terms, and all
parents are encouraged, and welcome to help in any way you can.
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Linda Sorg, mom of Elizabeth, unbalanced translocation 5p;7q, has been President
of CDO since 1996. To email Linda, please click
here
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Darlene Axelsson, mom of Lukas, 7q deletion, currently handles CDO's networking
responsibilities. She has been a member since 1997 and a Director since 2007. To
email Darlene, please click here.
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Nishantha de Silva, mom of Meth, 6q deletion, joined CDO's Board of Directors
in January 2002 and currently assists in replying to the many e-mail messages coming
through our website. To email Nishantha, please click
here.
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Adreanna Tarwater, mom of Nathan, 7;18 unbalanced translocation, has been
a CDO director since April 2005. Adreanna assists with membership correspondence.
To email Adreanna, please click
here.
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Julie Hofer, mom of Andrew, 9q31.2-q32 deletion, has been the CDO Librarian
since May 2002.
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Holly Hickman has been CDO's Co-Newsletter Editor since 2006. She is mom
to Avery, 2p inversion.
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Sarah Johnson Carter has been CDO's Co-Newsletter Editor since December 2007.
She is mom to Cayli, 3p deletion.
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Karen West has been a volunteer for CDO since May 2007. Her daughter Tabitha
has a 1p36.2 deletion. To email Karen, please click
here.
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