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Family Engagement


Family Engagement

This page was last updated on Jun 12, 2015 at 4:37 pm



To align efforts between the National Center on Deaf-Blindness, State Deaf-Blind Projects, Parent Centers, national parent organizations, and other state level partners to leverage resources and integrate technical assistance activities to better serve families with a child who is deaf-blind.


Jan Serak – Wisconsin Facets; Region 4 Parent Technical Assistance Center

Patti McGowan – National Family Association for Deaf-Blind; Pennsylvania Deaf-Blind Initiative

Sheri Stanger – CHARGE Syndrome Foundation

Edgenie Bellah – Texas State Deaf-Blind Project; National Family Association for Deaf-Blind

Jennifer Bigelow-Stambaugh – Michigan State Deaf-Blind Project

Diana Autin – NJ SPANN; Region 1 Parent Technical Assistance Center

Liz Healey – PEAL Center

Sue Ann Houser – Pennsylvania State Deaf-Blind Project 

Megan Cote – National Center on Deaf-Blindness

Peggy Malloy – National Center on Deaf-Blindness

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Nancy, your recent post could not be more timely. This population of young adults has been historically under served and rarely networked with other deaf-blind youth with Ushers or otherwise. We are lucky to have you in the network. Circling back to you in a bit.

Mike Fagbemi

Posted May 6, 2016 by Mike Fagbemi

Thank you, Nancy! The Deaf-Blind Project of Washington Sensory Disabilities Services is all signed up to have a table at the Usher Conference in Seattle, and we are encouraging families to attend.

Katie  Humes

Posted Apr 29, 2016 by Katie Humes

As the new director of the International Usher Syndrome Registry (now called the USH Trust) for the Usher Syndrome Coalition, I would like to offer myself as a resource to this group, whether on a formal or "as needed" basis. The Coalition will have its annual family conference on July 9th in Seattle, WA this summer. We also have a family network (now called the USH Blue Book) connecting families of children with Usher syndrome worldwide. I know that the number of kids with Usher syndrome being served by the state deaf-blind projects is low - around 240 - but we would like to support families, individuals with Usher syndrome and professionals who serve them in any way we can. Let us know if we can be of assistance!
Nancy O'Donnell

Nancy  O'Donnell

Posted Apr 29, 2016 by Nancy O'Donnell

NCDB : The Research Institute : Western Oregon University : 345 N. Monmouth Ave. : Monmouth, OR 97361
Contact Us: 800-438-9376 |

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