2026 Early Hearing Detection & Intervention Conference
March 15-17, 2026 • Jacksonville, FL
3/16/2026 | 1:55 PM - 2:25 PM | Pathways to Family Leadership: Turning Lived Experiences into Collective Impact | City Terrace 8
Pathways to Family Leadership: Turning Lived Experiences into Collective Impact
Families are the guiding force behind every decision that shapes the life of a child who is deaf-blind. Their unique lived experiences not only inform their own journey but also guide professionals and peers in building inclusive systems of support. By empowering families, we help them discover their voice — a “superpower” that influences their outcomes and inspires others through leadership and advocacy.
This session builds on previous work supporting families new to CHARGE Syndrome and expands the focus toward family empowerment and leadership development. Presenters will share how peer connections evolve into leadership pathways, enabling families to move from receiving support to becoming mentors and advocates.
Participants will also learn about a collaborative initiative between five national family support organizations in the deaf-blind community, designed to cultivate leadership skills and provide mentorship opportunities for families interested in helping others. Attendees will leave with practical strategies to strengthen family voice, foster empowerment, and promote sustainable peer-led support within early intervention systems.
- Participants will be able to identify at least 3 organizations that can help you build a better network of care.
- Participants will be able to list and apply 2 direct service strategies to help families find their voice.
- Participants will be able to able to chart the progression of family leadership and apply these principles in their practices.
Presentation:
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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.