2026 Early Hearing Detection & Intervention Conference
March 15-17, 2026 • Jacksonville, FL
3/11/2025 | 10:10 AM - 10:40 AM | Two Families. Two Genetic Syndromes. One Bond. | 319
Two Families. Two Genetic Syndromes. One Bond.
Genetic testing has many implications and isn't always guaranteed to deliver results. However, when testing does provide positive results, it can be welcome information for families seeking answers. In this session, Teri Urban (Vice Chair, Virginia Hands & Voices) will illustrate her experience raising a daughter with GJB2, commonly known as Connexin 26 and Alicia Rodriguez (Co-Chair, Virginia Hands & Voices) will illustrate her experience raising a son with Pendred Syndrome. Teri and Alicia will identify the personal benefits of genetic testing, how the results have helped them navigate their journey raising a deaf child and their siblings, and how their lived experience helps others navigate a diagnosis. Attendees will recognize that personal choices to pursue genetic testing don't indicate a desire to change the outcome, but a desire to better understand how to manage the diagnosis and prepare for the future.
- The participants will be able to define genetic testing and summarize the purpose from a family perspective
- The participants will be able to identify three benefits of genetic testing and how the results can impact a family's journey and help support siblings
- The participants will recognize the lived experiences of raising a child with Connexin 26 and Pendred Syndrome
Presentation:
3545975_18268TeriUrban.pdf
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Teri Urban
(Primary Presenter), Virginia Hands & Voices, teri@vahandsandvoices.com;
Terese ‘Teri’ Urban lives with her husband and their three children in Virginia. Her oldest child (14 years old) was identified at birth with bilateral sensorineural non-syndromic hearing loss, commonly known as Connexin 26. Her daughter’s loss was progressive, and she now utilizes bilateral cochlear implants and American Sign Language to understand the world around her. Teri’s passion for bringing deaf and hard of hearing children together and providing resources for families began in Vermont when she successfully resurrected Vermont Hands & Voices. After relocating to Virginia in 2016, she has continued her leadership efforts as Chair for Virginia Hands & Voices. She joined the team at Supporting Success for Children with Hearing Loss in 2022 as Director of Advocacy and Parent Outreach to help build a bridge between educators and families and the resources used. Teri is a member of the Virginia EHDI Advisory Committee and sits on numerous local and national committees that focus on the overall success of deaf and hard of hearing children. In her free time, she enjoys reading, traveling, exploring the outdoors, and spending time with loved ones.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Alicia Rodriguez
(Co-Presenter), Virginia Hands & Voices, alicia@vahandsandvoices.com;
Alicia lives with her husband and four sons in Fredericksburg, VA. Her youngest son, Theo, was born with bilateral sensorineural hearing loss due to Pendred Syndrome. He wears hearing aids, uses total communication and is doing great this year in first grade! Alicia has been a board member of VA Hands & Voices since 2019, when she discovered the organization and fell in love with their mission. In her spare time, she loves being outside with her boys and practicing yoga.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.