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Summer 2013

Julie and Brent sit side by side on the stepsMy name is Julie McGuire. I live in Omaha, NE with my husband and four children. My oldest son, Brent, is deaf-blind. Although he is 15 and healthy now, he was born severely premature at 23 weeks. We knew right away that he had vision problems, and when he was about eight years old, we were told by the school that he might need to go to an audiologist. Soon after, he was diagnosed with a mild hearing loss. Despite his challenges (or maybe because of them), Brent is doing well in school.

My leadership story began while attending a leadership training series offered by my state deaf-blind project. This training inspired me to help establish a parent-to-parent support network in the state of Nebraska. The network started with four groups of parents coming together during the leadership training. It didn’t take us long to realize that, even in a smaller state, there were many others with the same issues and problems we were each having within our children’s schools and our communities. We quickly became each other’s support system and began reaching out to other parents.

This leadership project was successful because of the support of others. We used our local parent center and our state deaf-blind project for support and guidance. We also had a guest from NCDB come in to help. I think the passion of wanting what is best for Brent was the key in contributing to my success.

The thing that surprised me the most throughout this leadership project was that even though everyone’s story was different, their reason for being involved was the same. We all want the best for our kids. I also surprised myself with how strong I am and how passionate I am about helping other families.

From here, our support group is working on new ideas and steps for where to take the group. There is a group of new parents of children who are deaf-blind who are interested in the leadership training. Our support network hopes to help with getting them involved in that.

I have also expanded my leadership into the national realm as a newly elected board member of NFADB. Being a part of the board will help me to continue to develop my leadership skills and continue to support families impacted by deaf-blindness.

OUR MISSION:  NFADB exists to empower the voices of families with individuals who are DeafBlind and advocate for their unique needs.


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