Guide for Extra X and Y Families and Individuals

Guide for Families and Individuals Affected by Extra X and Y Chromosomes

My name is Ginnie Isaacs. I am the mother of a young adult with Klinefelter Syndrome, as well as a social worker whose clients include adolescents and adults with a variety of developmental disabilities. I recently retired to continue in a small private practice, and to finish a project that I began last year of developing a lay-level guide for families affected by conditions involving extra X and Y chromosomes.
The guide will also cover issues of interest to affected adults.

Last year, I did forty interviews with adults with XXY, as well as with parents of children and young adults diagnosed with XXY, XYY, and Trisomy X. This provided an excellent basis for planning the project and what the guide would encompass, but I wanted to expand the comments and material available from parents and affected adults. The most time-efficient means of doing this is an on-line survey that participants can complete at a convenient time.

The survey is not for research purposes, and many of the questions do not require answers in order to advance to the end of the survey. I am looking for your opinions and for assistance that you can provide me in covering a number of topics. If your statements are particularly valuable, and you have provided me with an e-mail address, I may quote from what you have written (anonymously, of course) after first getting your permission. Your real-life situations may help to illustrate points, and to make the guide more readable.

The survey will take about 20 minutes or less, although you have an opportunity to write more in answer to a number of open-ended questions. If you give me your e-mail address, I can send you a copy of the summary once the survey results have been tabulated. I won't share your e-mail address with anyone, including KS&A, and once the project is done, and the guide is available, I will notify you that it has been published. I will also destroy the list of addresses.

Click on the link below to take the survey. When you complete the survey, you will go to a page that will allow you to contact me if you want to, and to learn more about the project.

Thank you for supporting this important work!

Ginnie Isaacs
Director of Education

[English section] [Studies]