2026 Early Hearing Detection & Intervention Conference
March 15-17, 2026 • Jacksonville, FL
3/11/2025 | 11:00 AM - 11:30 AM | You are not alone!- Supporting new families with CHARGE Syndrome | 303
You are not alone!- Supporting new families with CHARGE Syndrome
Babies with CHARGE Syndrome are often born with multiple life-threatening medical challenges. While families handle all of their complications, they are challenged by the lack of information and knowledge a lot of professionals have regarding this condition. One of the hallmark symptoms of CHARGE Syndrome is hearing loss; this need is often not addressed till much later in life due to other competing needs. The CHARGE Syndrome Foundation offers a lifeline for newly diagnosed families, connecting them with professionals, resources, support, and other families. We will share our successes with outreach activities with social media and other unconventional sources that have helped us identify new families in all states. We will share the impact and power of parent-to-parent support and how it builds our family's support systems and confidence. Strategies to better engage families from diverse cultural and linguistic backgrounds will be shared.
- Participants will be able to identify one local contact that can help them connect with the CHARGE Community.
- Participants will be able to learn 2 strategies they can replicate in their States to support newly diagnosed families facing multiple medical challenges
- Participants will learn strategies to outreach underserved families.
Presentation:
3545975_18202LourdesQuintana.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.