2026 Early Hearing Detection & Intervention Conference
March 15-17, 2026 • Jacksonville, FL
| Support and Engagement for families with children with CHARGE Syndrome
Support and Engagement for families with children with CHARGE Syndrome
Share successful strategies on how to engage newly diagnosed families with the CHARGE Syndrome Foundation; local agencies and resources. Present how social media can serve as the primary source of referral for families from all States. New parents can find strength, learn strategies, and support from other parents who have gone through the same journey with our Parent-to-Parent virtual support groups. Our Family Liaison Project is a model of collaboration to improve the Foundation’s outreach to both families and professionals at the national level. Under the Direction of our Outreach and Engagement Manager, our Family Liaisons build relationships, network, collaborate, and disseminate information. Family Liaisons share the latest CHARGE resources with the State Deaf-Blind Projects and the families and assist in child-find initiatives in their state. All these supports help eliminate barriers and help families access appropriate care.
- Participants will identify two new strategies to help facilitate child-find initiatives.
- Participants will be able to identify the Family Liaison assigned to their local area
- Participants will be able to explain two unique supports available from the CHARGE Syndrome Foundation that can be replicated in any area.
Presentation:
3478265_16304LourdesQuintana.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.