2026 Early Hearing Detection & Intervention Conference
March 15-17, 2026 • Jacksonville, FL
3/11/2025 | 11:30 AM - 12:00 PM | Familia CHARGE- lessons learned on supporting Spanish speaking families | 303
Familia CHARGE- lessons learned on supporting Spanish speaking families
**This presentation is available in both English and Spanish.**
CHARGE Syndrome is a rare genetic condition that affects hearing, vision, and presents numerous medical challenges. Families facing this diagnosis often experience isolation due to a lack of awareness about CHARGE and its educational and medical complexities. This sense of isolation is even greater for non-English-speaking families, who may have limited access to vital resources and support.
In this presentation, we will share our experiences and strategies for effectively engaging Spanish-speaking families worldwide. Through **Familia CHARGE**, a virtual support group, we’ve created initiatives that empower and connect this unique population. We will highlight the group’s evolution and the key steps we’ve taken to bridge language and cultural gaps.
By attending, participants will gain valuable insights and practical tools to adapt their approaches, ensuring they better connect and support non-English-speaking families with loved ones with CHARGE Syndrome.
- Participants will identify two strategies to connect with families who speak Spanish.
- Participants will learn about limitations of traditional outreach strategies for this population.
- Participants will hear parent stories and learn what works for them.
Presentation:
3545975_18206LourdesQuintana.pdf
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Lourdes Quintana
(Primary Presenter), CHARGE Syndrome Foundation, lourdes@chargesyndrome.org;
Lourdes, born and raised in Bayamon, Puerto Rico, has dedicated her life to supporting families of children with different abilities. Her passion for advocacy comes from her personal experience growing up with a sibling who had Cerebral Palsy.
She earned a Bachelor’s in Clinical Psychology from the University of Sacred Heart and began her career leading wellness programs for young children. Lourdes later completed a Master’s Degree in Clinical Psychology at Albizu University.
In 1999, she moved to Orlando, Florida, where she worked as a Mental Health Therapist. She then joined the Developmental Center for Infants and Children, specializing in early intervention services for children with developmental delays. Lourdes helped families integrate strategies to support their children’s development in areas such as language, motor skills, and social-emotional growth.
Over 16 years, she partnered with organizations like Silent Hope, the Down Syndrome Foundation, and United Cerebral Palsy, earning recognition, including the 2012 Don Quijote Award for Professional of the Year. Lourdes has also served on several boards, advocating for better funding for essential services.
Currently, Lourdes works as the Outreach and Engagement Manager for the CHARGE Syndrome Foundation, helping families and professionals access critical resources and support. She is part of the CHARGE Network for Deafblind International and has led multiple initiatives to engage Spanish-speaking families.
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.