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Roberta S. Rappaport, Deeply involved volunteer in the KS community Amer. Assoc. for Klinefelter Syndrome Info. & Support (AAKSIS)
Send response to journal:
aaksis{at}sbcglobal.net Roberta S. Rappaport
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To Whom It May Concern: My name is Roberta Rappaport. I am the Founding President of the American Association for Klinefelter Syndrome Information and Support (AAKSIS). AAKSIS is a 501(c)(3) corporation which was founded in December, 1999. A primary focus of AAKSIS is to provide information and support to individuals who have been dxed 47,XXY/Klinefelter syndrome and to also provide info. & support to the family members of these individuals. Another primary focus of AAKSIS is to raise awareness of the importance of an early/timely dx of KS by the medical community. Additionally, AAKSIS strives to raise awareness within the educational community about the educational affectations as well as the social impact of Klinefelter syndrome for a child who has this condition. We inform educators that when they see a male child who is not "fitting in", and no apparent reason can be found for this, the teacher should consider that this child may have the condition known as Klinefelter syndrome. As a "follow-up" to this, we suggest to the teacher that he or she contact the child's parents and suggest to them the need for a "follow up" to determine whether or not Klinefelter syndrome is the "root cause" of this child's difficulties. Since 2000, AAKSIS has presented an annual National Conference. While these National Conferences are open to anyone, the primary attendees are adult XXY individuals and parents of XXY individuals of any age. This year, the AAKSIS National Conference will take place on July 29 and July 30 at the Crowne Plaza Atlanta (GA) Airport Hotel. Extensive info. about this upcoming Conference can be found on the AAKSIS.org website. If the authors of this article or other interested parties would like to attend the 2005 AAKSIS National Conference, they would be most welcome! I found the article, "Unsuspected Klinefelter Syndrome Diagnosed during Oncologic Evaluation: A Case Series" to be most interesting and informative. The authors have truly "covered all the bases" in describing Klinefelter syndrome, its possible affectations, and the need for a timely dx for individuals who have this condition! FYI, my husband, who is not 47,XXY, and I are the parents of a 37 y.o. son who was adopted at birth. When our son was 12 y.o., as a result of a genetic karyotyping, he was dxed 47,XXY/Klinefelter syndrome. For our family, it was a "relief" to be able finally to attach a "name" to what had been the underlying cause of the educational and social difficulties which our son was experiencing. Prior to our son's dx, both a psychologist and a psychiatric social worker had dxed the "cause" of the difficulties which our son was experiencing as "poor parenting skills" on the part of my husband and myself! Sincerely, Roberta Rappaport 1-888-466-5747 (AAKSIS toll-free info./"help line") |
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