News:
NC 22q11 Deletion Support Group Meeting- Sunday, March 15, 2009
We are excited to welcome Donna Cutler-Landsman, educational consultant and author of Educating Children with Velo-Cardio-Facial Syndrome, as well as Dr. Matcheri Keshavan, a well-known psychiatrist, who will address medication use for behaviorial/mental health concerns in children and adults with chromosome 22q11.2 deletion syndrome. This meeting is primarily for individuals with 22q11.2 deletion syndrome (Velocardiofacial/DiGeorge syndrome) and their families. The meeting is open to the public and is free. Please see the attached flier for details.
NC 22q11 Support Group Holds First Meeting
The first meeting of the North Carolina 22q11 Support Group was held at Wake Forest University Baptist Medical Center in Winston-Salem, on Sunday, November 13, 2005. Over 75 individuals with the deletion and their families attended the meeting. Speakers included Dr. Thomas R. Kwapil of UNC-Greensboro and two parents, Caroline Blackburn and Jennifer Porter. Dr. Kwapil discussed cognitive issues and the relevance of IQ/achievement testing. Ms. Blackburn spoke about adolescent concerns for individuals with the deletion. Ms. Porter spoke about their family's experience.
We also asked parents about ideas regarding future meetings. The consensus was that meetings should occur at least annually, and that a newsletter should be printed in the future. Further ideas such as an online discussion group were also proposed. We welcome parents' suggestions, and encourage families to volunteer in support group activities.
NC VCFS (22q11) Support Group Holds Second Annual Meeting
The 2007 annual meeting of the NC support group was held on March 11, 2007 at Wake Forest University School of Medicine, Winston-Salem, NC. The keynote speaker was Dr. Robert Shprintzen, PhD, from SUNY, Syracuse NY. Dr. Shprintzen is reknowned for his work on 22q11 deletion syndrome. His talk covered medical, developmental and psychiatric aspects of VCFS.
About 70 parents and guardians attended the meeting.
Dr. Paula Goldenberg spoke about Victory Junction Gang Camp and the opportunities if offers children with VCFS
Dr. William McGuirt Jr, ENT surgeon spoke about the ENT manifestations and treatment for these
Dr. Vandana Shashi presented the website of the NC 22q11 support group
A Question and Answer Session followed
We polled the families as to how best the support group could serve them. These results will be published soon.
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