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Spring 1998 Table of Contents
Versión Español de este artículo (Spanish Version)

Usher Syndrome: Families Come Together for Support

by Connie Miles, Educational Specialist and Kate Moss, Family Training Coordinator, TSBVI Deafblind Outreach

Parents of children with Usher Syndrome had an opportunity to meet with each other during this year's Symposium on Deafblindness in Austin, TX. The parents came from urban and rural areas of Texas. Some of these parents had just recently learned of their child's condition, while others had known about it for years. Many had never met another family who was dealing with the issues of Usher Syndrome. All these families welcomed the opportunity to share information, questions, concerns, and resources with each other. All arrived accompanied by dreams and photos of their children. Each family went away with hopes to come together again.

Great discussions were generated during sessions conducted by Marlyn Minkin of Seattle at the Symposium. For this reason, the Deafblind Outreach staff is hosting another gathering June 27-28 in Austin for these parents. While many of the families expressed an interest in including their child with Usher Syndrome and their siblings, others felt that for this next meeting, a parents only gathering would be best. Deafblind Outreach staff would like the opportunity to meet with these families and other families of children with Usher Syndrome who were not able to attend the Symposium for the purpose of sharing and planning for Outreach support in the future. There are many resources available to you and your family as you work through decisions related to helping your child achieve his or her dreams for the future. We want to hear from you if you are the parent of a child with Usher Syndrome. We would like to see all of the families of children with Usher Syndrome have the opportunity to direct the development and expansion of services related to individuals with Usher Syndrome in Texas. Please let us know about your needs, ideas, and suggestions. You may contact Connie Miles at (281) 298-6157 or Kate Moss at (512) 206-9224 or write Deafblind Outreach at 1100 West 45th St., Austin, TX 78756 or email to <sheditor@tsbvi.edu>.

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