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Fall 2009 Table of Contents
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Announcement from the Helen Keller National Center Website

Abstract: this article is about a research study and requests consumers and/or parents to participate by responding to a questionnaire.

Key Words: blindness, deafblindness, CHARGE Syndrome, research, Dr. Kim Blake, Dr. Nancy Salem-Hartshorne

If you are 13-years or older, and have There is still little known generally about CHARGE syndrome, Dr. Kim Blake and Dr. the problems older people have when Nancy Salem-Hartshorne would like to in-they’re growing up with CHARGE syndrome. vite you and/or your parent or guardian to Dr. Blake and Dr. Salem-Hartshorne would participate in our current research study. like to ask you questions about your past life and your present life with CHARGE syndrome. The questionnaire will take approximately 30-45 minutes to fill out and some of the questions will be about the things that are good in your life and not so good. This is described as “the quality of life.”

This research study is being conducted by a medical doctor, Dr. Kim Blake, and a Psychologist, Dr. Nancy Salem-Hartshorne, who also has an adolescent son with CHARGE syndrome.

If you volunteer to participate, a packet will be sent to you that will include consent forms and the questionnaire to be sent back to us.

Please contact Dr. Blake or Dr. Salem-Hartshorne via email or telephone if you would like to be a part of this important research!

Nancy Hartshorne:

(989) 774-6469 (Eastern Time Zone) Dr. Kim Blake:

(902) 470-6499 (Atlantic Standard Time)


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