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Education, Advocacy, Information & Support
For all those affected by a rare chromosome disorder.

About CDO

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:

Genetic Alliance NORD Rare Disease Day

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
  • Michael D. Graf, MS, CGC, MBA Director, Client Services, DNA Direct, San Francisco, CA
  • Mary Haag, Ph.D. Director, Genetics Laboratory Shodair Hospital Helena, MT
  • Vaidehi Jobanputra, Ph.D., FACMG Assistant Professor Columbia University Medical Center
  • Dr. Shashikant Kulkarni Director, Clinical & Molecular Cytogenetics, Laboratory & Genomic Medicine, Pathology, Washington University School of Medicine, St Louis, MO
  • Iosif W. Lurie, M.D. Ph.D. Consultant, National Human Genome Institute National Institutes of Health Bethesda, MD
  • Thomas Morgan M.D. Medical Geneticist Vanderbilt University School of Medicine and Vanderbilt 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
  • Carole Samango Sprouse, Ed.D. Director Neurodevelopmental Center for Young Children Assistant Clinical Professor - Dept of Pediatrics George Washington University Washington, DC
  • Lisa Struss, M.A. CCC-SLP Speech Language Pathologist
  • Donna 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.

Linda Sorg

Linda Sorg, mom of Elizabeth, unbalanced translocation 5p;7q, has been President of CDO since 1996. To email Linda, please click here

Darlene Axelsson

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.

Adreanna Tarwater

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.

Hofer Family

Julie Hofer, mom of Andrew, 9q31.2-q32 deletion, has been the CDO Librarian since May 2002.

Johnson Carter Family

Sarah Johnson Carter is a Director. She is mom to Cayli, 3p deletion.

Lerner Family

Heidi Lerner , mom to Max, 6q deletion 16.1-21, has been a director since 2009.