The Foundation relies on volunteers from all of the country to help raise awareness and support, reach out to other families, and help caregivers make informed decisions.
The Foundation utilizes two types of volunteers:
Awareness Coordinators and Regional Coordinators
Awareness Coordinators (ACs) raise awareness about CdLS through community activities/events, outreach to professionals and government leaders, and contact with the media. ACs are typically family members or caregivers of a child with CdLS and are passionate about increasing awareness of the syndrome.
Regional Coordinators (RC) are parents charged with providing support and information to other families in their region and/or state. They listen to concerns, provide support, help identify local specialists and resources, and connect families. RCs may also host family gatherings.
The Foundation can facilitate contact with the RC in your state. Please call or email our